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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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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Perfection in Imperfection.

Tomorrow night Channel 4 airs the first in a new series called Katie, My Beautiful Friends following Katie Piper, the TV presenter who has facially scarred after an acid attack, as she meets young people who also been scarred. I haven’t seen the show so I can comment on it yet, but this is a subject close to my heart. My wife Diane was scarred after she was scalded as a young child. She was burnt all over her right arm and her left side, and after a series of surgeries to ensure she could still use her arm was left with a scar that runs from her shoulder to her hand with other scars on her back and bum.

I met her when she was 18 at the Electric Ballroom in Camden, and fell in love with her straight away. It took me 6 years to get her to go out with me, mainly due to my crap chat up technique, and we have been together for nearly 16 years. She is one of the most amazing people I have ever met, both internally and externally. She is as beautiful on the outside as she is in on the inside. If I am truthful, I saw her scar on that first night at the Ballroom and knew by the way she had it exposed for all to see that she was going to be the girl for me. Not only was it beautiful scar (I must admit I do find scars sexy) but I could tell from the way she held herself that she was a proud strong woman. There was no apology or desire to hide her scar. She defiantly had it on show, and I knew it was to dare someone to comment on it.

I was right, and as I got to know her I witnessed just how weird people can be about scars. I have been disabled since birth, and thought I had seen it all until I met Diane. My first experience of just how hateful people can be was when a woman started screaming at Diane to hide her scar, from the other side of the street! This woman was offended that Diane was walking around with a her scarred skin on show, but what really shocked my was that this woman was black. For some reason I thought she would have understood how awful it is be discriminated against due to something only skin deep. But it seemed that anyone might feel they could react to seeing a scar in ways that changed the way I saw the world. Once a homeless man, who was sleeping rough in Soho, stinking of booze and urine with a dog on a string and who was also blind in one eye shouted out to Diane asking why didn’t she just chop off such an ugly arm. The fact it worked perfectly didn’t matter. Time and time again she would be the target of anger and vitriol purely because she did not hide her scar. Apparently this was nothing compared to the reactions of people to her scar when Diane was a child. What kind of person would try to make a child ashamed of being scarred?

But Diane was not only not ashamed, she was proud. She trained through out her youth to be a ballet dancer, and never let her scar stop her. Not only did she dance but she also acted in plays and films, and after we got together, she started modelling. She appeared in photo shoots for major magazines, fashion companies and publicity campaigns. We started up a band called Erotics, and began playing gigs all over the UK. She was the lead singer and was a superb front person. No one even commented on our female lead singer having a scar (although they did freak about me being a wheelchair user – so I have no idea what that says about the music industry).

What was great however, was that we gradually noticed a change in the way people reacted to her scar. Slowly it went from people reacting badly to truly positive. It became almost trendy. She did a fashion show, and a make up artist actually flew from Holland just so he could do Diane’s make up. I can honestly say it has been years since some even mentioned Diane’s scars, either to her face or privately to me.

I must admit while I am pleased that TV is actually doing something to confront the way people who have been scarred are treated in society, I feel it is really sad that other people are still finding themselves confronting attitudes that we thought had gone the way of other discrimination. I just hope that this show helps other people gain the strength and confidence that oozes out of my wonderful wife.

Personally I feel that only those who could be described as imperfect are perfect. I have mixed with all manner of so called “Beautiful People” in my life, and have found them all to be wanting. But not only is my scarred wife a fantastic, talented, stunning person on the inside, but her scar makes her even more beautiful on the outside. Like a work of art created by accident, medicine and nature. That is how I feel we should see all scars and deformity. True perfection lies in the imperfections.

Katie – My Beautiful Friends
The Katie Piper Foundation
Mik Scarlet Music Projects – Full Back Catalogue

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