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The Wanderer Returns

Jeez, it has been a scarily long time since I posted on this blog. Or any blog, for that matter. It’s not even that I’ve had nothing to post about, although some…occurrences I’d have to bite my tongue about, however much I’d like to make them public… No, it’s not that my life has been a big old nothing, it’s that, for various reasons (depression, anaemia, my skin sucking up all of my bodily goodies to heal itself, leaving me all drained and raisin like), I haven’t been able to find the words for all that has happened in the time I’ve been AWOL. I couldn’t un-muddle my head enough to commit my tales to paper – vellum or virtual. No pen, however pretty, never mind the ink, could drag the terms I needed across the pages. And I don’t know if I will find them now. Or, more importantly, for what I want to write next.

That is what I know any one of my friends and family want to know, to understand: what on earth happened to my kidneys to land me in the ICU?

I want to write about it for myself, too. A catharsis, and a way to get my head around it all. However, not only is it a real saga, I’m still recovering from the kidney failure and all that came with it, plus still in need of at least two pints of blood to fettle this damned anaemia. So it might take me a little while to get it all out there.

(I know I never managed to write the posts about EB, but that doesn’t mean that I don’t still fully intend to write them!)

So…stay tuned. The big story is coming.

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To bleep or not to bleep

Hey all,

As my friends and Twitter followers will know, I have a fair bit to blog about, and hope to do so very soon. But tonight, I felt compelled to tap out a quick post about censorship on TV.

After Doc Martin and the ten o’clock news, there was a show called ‘Exposure’ on ITV1, featuring a rule-breaking bailiff. It was really only background noise, as I was reading whilst waiting for a show to start on another channel, but one word in particular made my ears prick up, and my eyes meet the screen.

Before I say why, it seemed to me that this bailiff seemed to get a kick from wielding power over people who owed money, using intimidation, threats and humiliation to get what he wanted from them.

In his case, he was collecting unpaid Council Tax. Yes, it is unfair that the vast majority of people do pay it, and yet some decide the don’t want to and won’t. But others simply cannot pay, maybe because they have been made redundant, their business has collapsed, or they have found themselves seriously ill or injured, and are still wading through the bitter treacle and jumping flaming hoops – also known as the process of being allowed benefits.

The attitude of this man was aggressive from the outset, telling his “apprentice” – an undercover reporter – of ways to get clients on their “f*cking knees”, proud of his knowledge, and seemingly violent, methods.

“Fucking” was edited as above, where his low, conspiratorial voice necessitated subtitles, and the spoken word was bleeped out.

Fast forward a minute or two…

“There’s no toilets in garages any more because Pakis don’t like cleaning them.”

Neither the subtitled or spoken word was censored. I couldn’t believe that such an incredibly offensive word was there to be seen and heard. Not just once, bit repeatedly.

Yes, I understand that fuck is still an offensive word to many people, but the show was on past the “watershed”, even before which, fuck can be heard on TV shows and films.

The P word, like the N word, is offensive to a entire race and nation of people. Remembering a girl in my class at secondary school being made to cry by other girls singing a cruel song containing the word, I quickly switched off. Just as he decided to speak in a supposed Pakistani accent, and harass a man who didn’t even live at the address, stating “if this happened where you come from I’d be in ‘ere with a stick and you’d be up against that wall.”

I’m sure some people will have an issue with me saying P and N words, but they are not my words. I know people of my colour have, and do, use them to create hurt and humiliation. I haven’t censored funk because, largely, I find it inoffensive.

I believe censoring fuck only makes it seem more offensive than a word that has caused thousands of people emotional and mental pain, and I don’t believe that is true.

I’m sure ITV1 had a good reason for exposing this man, and others like him in his business, who constantly and flagrantly breaks out of the guidelines allotted to bailiffs. I hope it will shame those who are at the head of the industry into creating serious rules, and punishments for those who break them, particularly when violence and racial assault is involved.

But they should be ashamed of their censorship failings. The P word is not one we need to hear on TV, unless come from a Pakistani person, as with the N word coming from a black person. I believe they own those words know, reclaiming them from those who used them as weapons.

I wonder, readers, which words do you think should be censored? And what do you think about the censorship in Exposure (oh the irony!)?

Let me know!

Mel

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The Curse of Lottery Winners

Today, the winners of the huge £161 million Euromillions lottery win made themselves known.

Like most people, if I had won, I wouldn’t have breathed a word to anyone but my nearest and dearest, but there have been comments that the couple were pressured into making their announcement. Some said they were told it would be “safer”, but I have no good sources to back that up. Personally, I can imagine they were pressured, but mainly because it benefits the consortium to show the public that “rags to riches” stories do actually happen. Then more people go to buy tickets, and the owners cash in even more.

(I do indulge in a Euromillions ticket now and then, so I’m not condemning buying them. Just the profiteers pressuring winners to make such a potentially unwise decision.)

I can’t say I’m not a bit envious. I can’t imagine ever spending that much money, but I can imagine helping all of my family and friends, my favourite charities…the list goes on. And, not so philanthropically, buying a house with a library, and having a walk-in wardrobe filled with Vivienne Westwood and original 1920s dresses…and a holiday apartment in Paris *sigh*. When it was announced that there was only one winner, and I knew it wasn’t me, I thought “lucky bugger!”, and hoped it would be someone nice. Not another cocaine snorting, obnoxious oaf, dripping in gold chains.

I was amazed by what people on Twitter were saying about the couple. It’s human nature to be envious (personally, I don’t think it’s a sin), and people will always make snarky comments. I’m hardly Snow White in those stakes! But I think there’s a line between being a bit bitchy, and being outright cruel. The winning couple are both big, overweight, whatever you want to say, and the husband obviously has mobility problems as he uses a walking stick. They said that they have both had serious health problems in past few years. It sounds about time that they had some luck!

There were a few minor bitchy comments. That isn’t what got my back up. There was some name calling, which I won’t repeat, but most was based around characters from Star Wars and Austin Powers. That started to rile me, but worse was to come. Tweets and Facebook statuses such as “f*cking fat f*cks. Kids are starving and they’ll spend millions on burgers”, “first thing they should do is get surgery so they don’t look so f*cking disgusting” and “if there [sic] to [sic] stupid not to eat so much, it’s a wonder they could fill out the ticket”, with retweets and ‘LOLZs’, really pissed me off.

I have recounted these tweets because people on my personal time seemed to think I was overreacting. Maybe I am, but I just cannot see how such comments are justifiable. Why does weight have to be such an issue? Not that they need a particular reason, but their severe ill health, and subsequent mobility problems might just have something to do with their size. You can’t very well exercise if you struggle to walk! Not all big people are so because they don’t stop eating! It wouldn’t be acceptable to bring race or religion in to it, and rightly so. And I do think, that given their health problems, there is a hint of disablism, conscious or not with some of the commenters.

All the couple have done is win a game of chance, which anyone could do. They’re not (as far as we know, at least) criminals, hate-mongers or anything unpleasant. Just two people who are happy to be able to help their family and friends, and being able to travel in a way that accommodates their health problems, having not been able to before.

Maybe it is just life, but I don’t see how body fascism is that far removed from racism and disablism. I would also say the same if the nastiness had been directed at people who were very thin. I’ve had family members suffer with anorexia, I’ve had family and friends abused for being “big”, and I’ve had friends abused for being thin (which apparently equals being vain, shallow, and whatever else!).

Maybe it has really riled me because I’ve been bullied because of jealousy. Not because I’m rich or beautiful (definitely neither of those!), but because I got “special treatment” i.e. being pushed in my wheelchair. I’ve also seen my loved ones to be attacked due to jealousy over their partners, their jobs, their clothes, even their fingernails! It hurt them, and I hated to see it.

Maybe, in fact probably, the couple don’t care what people say about them. I’m sure they are on Cloud 9 right now. But maybe it will hurt them; wealth doesn’t mean you suddenly stop feeling pain and humiliation. Look at these celebrities bleating to the media.

Earlier I said that we could say “that’s life” whenever someone is horrid. I didn’t mean that all horrible statements are equal in their offensiveness, as I’ve said above, but that we could dismiss all hatred, racism, sexism, homophobia and disablism as such. You get horrible people saying horrible things in life. It’s also life that people are living in poverty and dying of illness, but we rightly act against those things. Conservatism believes we are all inherently bad and need controlling. I believe the opposite, that we’re inherently good, even though we might naturally tend towards some negative traits like envy etc, most people do far more good than bad. I believe that only the goodness in people can spark change. I guess that’s why those tweets upset me so much.

I do not think that everyone in the world is a horrible sexist, racist, disablist, fascist person; I’ve been mean, and I’ve insulted people and bitched, when the recipient or target has done something wrong or hurt me or a loved one – not that I’m excusing it – but these people haven’t hurt anyone.

I’d love some of the ‘haters’ to say why they think they were so much more deserving. Maybe they’d like to say here….

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Soul on my skin

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’.

As the chief said this, my dad leant forward and said “like yours are for you”.

And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them.

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body.

For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again.

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more.

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying.

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be.

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

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