Right to Die? Right to Live is better!

Yet again the press is filled with the story of a campaigner who are going to court to end the terrible suffering of their life as a disabled person. This it is Paul Lamb who is claiming that his life is should be ended at the hands of the medical profession, as he feels he no longer wants to go on but is too disabled to end his life himself.

I am so saddened that another person feels that they have the right to even consider taking this case to court, whatever their disability or condition. I keep hoping that our society will start to see that if we do go down this road, we are starting out on a very slippery slope. Once the law has been changed to allow doctors and medical professions to assist a person to die, where will it end? I know from own experience that some doctors see someone like myself as having a “poor quality of life”, no matter how much I have tried to make them see how wonderful and fulfilling your life can be when you are disabled.  But we never see that anywhere in our media, not even when the Paralympians were going for gold. It’s always how amazing we are in spite of our disabilities, not thanks to them. And you never see anyone who feels like me, that becoming disabled was the making of them. The constant barrage of  negativity creates a stereotype of disability that feeds into the psyche of everyone, especially those people who suddenly find themselves with a new level of ability. Something that is really important about Mr Lamb’s case is that he is not terminally ill. No he has a static disability, and therefore is not being “saved” from a ever growing level of illness or incapacity but rather from his feeling that things just cannot get better for him and people like him.

I know, as while I have been disabled from birth, when I became a wheelchair user at the age of 15 I really thought my life was over. I just couldn’t see how I would live, work or find love. I imagined the kind of life which Mr. Lamb describes when he talks about his own. Yet this is not what happened. Instead, with the support of  family, friends and many others, as well as taking advantage of all of services that the state provides, I began to build a new future for myself.  Within a few years I had started out on the road to becoming the man I am today, with the amazing life I live. I now look back on my newly acquired level of disability as a truly positive thing, the day my life started for real. I truly believe that everyone could learn to feel this way, if they were given all the assistance, guidance and support that is required to help people come through what is a hugely difficult process.

This is what Mr Lamb really needs. Not a change in the law that would open a can of worms for all of us, whether we have a disease, disability or are elderly… or eventually squinty, ugly or just undesirable. No he needs help! From watching his interview on the BBC earlier this evening, it is obvious to me that he is depressed. Not only is this a normal effect of learning to live with a  disability, and I myself went through a serious depression early on in my life on wheels, but it is also caused by chronic pain, another issue that Mr Lamb complains of suffering. Yet again this is something I fully understand as I also have long term chronic pain  as part of my disability. So I really do understand why he feels this way, but I just can’t support his quest for assisted suicide. I would instead want to see a campaign that ensured that people like Mr Lamb were supported to have the kind of life he wishes he could have, which is possible no matter what society might believe.

We must stop always focusing on the negative stories of the very few people who are finding it difficult to cope and instead expose the myriad of positive stories our there of happy, contented disabled people. It will be of benefit for all of us, disabled or not, and will go a long way to changing the lives of so many people who are having such problems with building a new life after coming to a disability. The thing that saddens (and worries) me the most is that this campaign coincides with the big government push to cut costs and services. To me this is not by accident. Why spend all that money on creating a society that ensures that disabled people can live fulfilling, happy, independent lives when you can assist them out of this world and save all that lovely cash for the fit healthy non-disabled? Combine this with the terrible way disabled people have been portrayed as drains on society or fraudsters and it is a perfect storm for this story.

So please, everyone who reads this; stop and think. Next time you see someone begging to be “put out of their misery”, no matter how much you might buy into the stereotype that this must be the only human thing to do, please understand that you are entirely wrong. The only true act of humanity would be to stand beside them, support them and help them through on their journey to a new understanding of what is possible for someone with a disability. If we all fight to create a world were that is the reaction to seeing people in Mr Lamb’s position then not only will they benefit, and thus become less and less common, but so will we all. Because at the end of the day the fear of how people would  cope if it happened to them fuels the public support for this campaign, and of course all non-disabled people are just disabled people the day before the accident or illness hits them. So if we could remove that fear and instead start living in the knowledge that we would all be helped to create a new, and possibly better, life, then the word “disability” would no longer have all the negative connotations that are currently associated with it.

Being disabled should never be considered a reason for a person to be put down. I just hope that one day being disabled will be something that people feel  proud about. I know I am… very.

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Paying the price for being made scapegoats.

Today two teenage boys have pleaded guilty of killing blind 85 year old Paula Castle and this has been widely reported in the press. This is such a sad story but I feel it lifts a lid on an underlying issue with our society at the minute. These two young boys felt nothing as they violently attacked this elderly person, who was obviously very frail and disabled, and even repeated their crime on the day that Mrs. Castle passed away, this time against 75 year old Rose Mohamed. But why is it that there are young people out there who have so little consideration for those who are weak and vulnerable? Many people, especially in the press who are so outraged by this kind of crime, will say it shows that society is falling apart and that we need to crack down on these types of criminals. While I do agree that tough sentencing is required for this kind of crime, I think it is vital to place some of the blame at the feet of some sections of the press who have complied with the current government’s campaign to make scapegoats out those members of our society who need assistance and support.

As a disabled person I have also been a target for young people who saw me as a soft touch. My wife and I were targeted by a group of youths when I lived in West London, which went on for some years, escalating in severity during this time and ending with me having to flee my home in fear of my life after a threat to burn my flat down. The police, while being supportive, insisted they could do nothing until something actually happened, but not wanting to wait until the flames licked around my tyres or the knife stuck out of my or my wife’s ribs, I felt that running away was the best course of action. So I gave up my fully adapted two bed flat that had been my home for years, and the friends I had in the area, and hid in a one bed un-adapted flat in my wife’s home town of Camden. It took us years to rebuild our lives, but at least we both got away alive. We had to live apart for two years after we were married as neither of our flats were suitable for us to live together in, but that is another story I feel.

Throughout this ordeal I was told by my youthful tormentors that it was “all right for me as I got loads of benefits off the state”, that I was “a drain on society” and that “people like me should be put down”. Now where would these young people get these attitudes from? Well obviously their parents, but they got them from the media, as did their charming kids. For too long now the old and disabled have been portrayed as an expense that our country can no longer afford, and that these groups get stuff that everyone else doesn’t get, and for free. If you are a poor unemployed teenager it is easy to start resenting those who society seems to be upset about due to the cost of having them as members. So the old and disabled become valid targets.

Once peer pressure alone would have stopped a teen mugging someone who was 85. I know when I was in my early teens Punk was the big thing, and while we all sauntered around in our bondage trousers with our spikey hair and our safety pins we would never have dreamed of mugging some one elderly or disabled. Not only would it have occurred to us, but even if it did our mates would have kicked the poo out of us if we dared to suggested it. But that was because even though we wanted to shock our elders and betters we still considered them as vaild members of society. We looked at those in power as the ones to blame for our problems, not the old and disabled. However much we were hated by the press and public we still had respect for our elders, even though it might not have shown.

But if you continuously hold those who are least able to defend themselves up as part of the reason why our economy is so bad, as a cost we cannot afford and as people who would be better off dead then you end up in the position we are in now. With hate crime against the disabled and elderly going up horrendously, and an attitude of jealousy and distrust becoming more and more pervasive in our society. While this is a truly tragic case, and the boys who did this crime must be punished, I do hope the press takes a moment to reflect on how their reporting and the language they use may when they discuss groups like the elderly and disabled may have played a part in creating a world where this kind of crime happens.

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Xmas Spirit?

Recently I have found myself torn about what to write about. Every time I felt ready to put finger to keypad, another issue caught my attention. Then I realised that they were all connected.

The first big issue to drive me to my blog page was the recent changes in the Motability scheme. Motability is the charity that was set up to allow disabled people to afford to be able drive themselves around. It replaced the old blue three wheeled Noddy car, that not only meant that disabled people had to go everywhere alone as it was a one seater but also that they took their lives in their hands as it was a total death trap. Anyone who saw Jeremy Clarkson drive round Sheffield in a three wheeler will have seen why. Originally it only offered a few cars, but it grew to allow disabled people to use their Mobility component of their Disability Living Allowance to fund a huge number of vehicles, along with a deposit for the more expensive models. Another reason why so many disabled people had to use the Hire Car Scheme from Motability is because getting insurance when you are disabled is very difficult and expensive, but insurance is included with the scheme. This because when you get a car under this scheme you don’t own it, you lease it. So the insurance is a fleet insurance, which is nice. Not so nice is that the car is never yours and after three years you return it to Motability, who then sell it on as a second hand car.

Just before I started my search for a new car I recieved a letter from Motability outlining changes to the scheme. From now on fewer cars would be available, with a total deposit limit of £2000 and any other named drivers had to live within five miles of the primary vehicle user. It was explained that this was due to the recent stories in newspapers such as the Daily Mail, where apparent cases of fraud had been discovered. They also complained that Motability allowed disabled people to drive expensive cars. Check out the story to see some of the examples. The one thing they totally ignored was that all cars under Motability scheme owned by Motability, and after the three year lease period are returned for resale. If you add this to the fact that for most cars that they used to offer had a deposit of around £500 right up to £4000, which is non-refundable, and a hire fee £50 per week to Motability. On top of this Motability has negotiated serious discounts on new cars, and in many instances Motability must break even or maybe make a small profit.

Let me demonstrate with a a personal story. Many years ago, when my Mobility Allowance was around £38 per week, I hired a Ford Escort through Motability. I paid £500 deposit and signed over the full £38 per week for a three year period. During the process I recieved some paper work, but it should have been sent to Motability. It was the invoice for the car and it was for under £3000, even though the list price was around £9000. So let’s do the maths. £38 times 52 weeks times 3 years equals £5928. Add my deposit of £500 and we end up with £6428. So for a car that cost Motability £3000 I paid £6428 and gave it back for them to sell on… and they kept any monies received from that sale. Now I don’t mind this situation as I know that I would never been able to get car insurance, seeing as I was a musician and TV presenter with a disability. But it does demonstrate that all this fuss about disabled people getting favourable treatment are just lies. I just wish that Motability had tried to fight the smear campaign from the press instead of just giving in. I do know that I am having real trouble finding a car that is suitable for me now. So thanks The Daily Mail.

Another story that caught my eye is that of David Askew, the disabled man who was bullied to death by local youths up in Manchester. My wife and I were targetted by a group of “youths” when we lived in Hammersmith, West London. In the end it got so bad I had to leave my home, even though I lived under the Housing Association Habinteg who were set up to ensure disabled people could live independently in society and was totally adapted to suit my needs, as no one came to our aid. The police said they could do nothing until we were attacked, but when my wife was seriously beaten up by three masked yobs while I helplessly watched, they could do nothing as we could not positively identify our attackers. My HA were useless and so I gave up my flat and moved into a totally unsuitable place to get away from the threats and violence. It took me three years to find a new flat suitable for me, and this really damaged my health. It is a fact that disabled hate crime has increased in the last few years, and it is partly due to stories like the one in the Daily Mail mentioned above. These lies and half truths have caused many people in society to see disabled people with jealous eyes. We are no longer pitiful, which is great, but are now objects of hate and envy. But this attitude is not just for disabled people. At a time of massive unemployment and poverty, anyone who may need to ask for assistance from the state is now seen as an easy undeserving target.

Strangely I am currently reading Charles Dickens’ Christmas Carol, and have watched both the modern version with Patrick Stewart (Star Trek’s Captain Pickard) and the classic Alistair Simms version on the old google box. This tale of a man with a hardened heart discovering the truth behind the point of life should have resonance with all of society today. We should listen to the three spirits and see the truth about the world we live. Sure there are people out there that break the rules, but most are really in need and we should be happy to help them. And the rich should be even more happy to contribute more to making sure our society is a fair and happy place to live in, not only at Xmas but all year round. Sadly more and more people seem to be touched by the spirit of Humbug at the minute, aided by our press.

So come on every one. We live in a rich society, where some people are so rich that they an afford flats in London that cost over £9 million pounds – yes I saw a recent advert for a flat near me for that much…. a flat? £9 million? they must be mad, you could buy a small county for that much in some parts of the UK! – so we should not listen to our inner Scrooge. Instead we should have an open heart and wish good will to all. In the words of Tiny Tim, one the most famous disabled people in literary history and someone I know I resembled when I was a kid, “God bless us, everyone”. Just think if he was around today the Daily Mail might describe him as a scrounger and accuse his family of being benefits cheats if he got any of the help he was entitled to. And never forget it was stories like The Christmas Carol that slowly led to the Welfare State. The last thing we want to go back to the time the tale was set in, with workhouses and poverty on an unimaginable scale.

Anyway, rant over. Happy Xmas to you all and superb New Year!

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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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Riots – Can Anyone Claim That They Are The Answer?

Today I wheeled into Camden Town Centre and witnessed the aftermath of the thankfully minor troubles that took place last night. While some shops had been looted and many windows smashed, I know that the place I call home got off lightly. The footage on TV and photos and videos on line show the true level of damage and destruction left in the wake of the rioting that gripped London and the country beyond. As many people who read my blog must know, I am a bit of a lefty and so they may expect me to be one of those who explains away this orgy of crime and violence as a reaction to unfair treatment and lack of opportunity, but I must disappoint you.

I spent the day thinking about some of the claims from community leaders and some of the youths who were involved, but they just don’t stand up. Let’s face it, as a person who was born disabled I have experienced discrimination through out my life. As a young New Romantic in a small town I experienced some extreme treatment from the police and feel the sting of being excluded almost every day. Even this weekend I was not allowed into a restaurant in Brighton (called Picasso’s in Market Street) because I was in a wheelchair, so I know how angry being excluded can make you feel. I really wanted to throw one of the chairs outside the eatery through one of their windows for sure, but I didn’t. In the past I must admit I have reacted to blatant discrimination with vigour, and with some force. The difference is I did not target anyone else. The person who was the victim of my wrath was the person who had discriminated against me, not anyone who happened to be nearby. Or any local business that had some stuff I fancied.

And that is the true reason for all of this. However much people may claim otherwise, this whole chaos is driven by greed and jealousy. These gangs of youths are not fighting to get fairer treatment, they are going out to get stuff. In Camden, the 3 store was totally cleaned out of stock. Even the displays have been taken. I can see no way that this level of theft can be a political act. Other shops, like JD Sports and O2 where also ransacked, yet did the youths gather and march to Whitehall? Of course not. That would be an act of political rebellion. Looting and smashing things up has no real chance of changing the way any minority groups of treated, but it will mean the perpetrators will have new mobile phones, trainers and wide-screen TV’s.

The saddest thing is that these youths will effect the very places they live. Places that are already deprived. Sure Camden isn’t a seat of poverty, but it does have some very poor areas and is struggling in the current economic situation. How can looting and mindless vandalism lead to anything constructive? Some of the places worst effected will take years to get near to normality. Not only will it bring down the places were these young people live further, but it will give those who do discriminate against them the excuse to do so. By acting this way they have just conformed to the stereotype that society at large has of them.

So come on, stop this craziness now. Put this anger to good use, and stop making yourselves into the very thing that leads to the responses you claim to be reacting against. That way you will prove that all of this isn’t really just a way of stealing things you feel you should have. Don’t believe the crap that Rap stars tell you about the gangster life and if you really feel the need to do something, make sure it’s constructive. Use your anger to change things, not smash them up. But if, as I suspect, you’re only driven by selfish desire then I am afraid you will have no friend in this lefty liberal. And if I’m not on your side, then imagine what the Daily Mail reading man in the street thinks. He’ll be shouting “Hang ’em”, and remember that this squeezed middle and their reactionary politics decide what happens in our country. So if you thought you had it bad before all this, just wait.

As a foot note I would just like to praise the local police here in Camden. I found this piece of footage shot as the local troubles started, and was amazed at the bravery of the police involved. Going into the situation in nothing but their usual uniforms in such low numbers… they all deserve medals! Check it out –

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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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Out of Touch?

I regularly run a session of disability awareness training for various companies, and am about to venture into training for media companies. I got the gig after I passed on some comments about language and disability to a TV production company. But before I begin advising them, I must admit I find myself filled with self doubt. You see I wonder if am out of touch with how disabled people feel about the way the world sees them now.

When I began my career in broadcasting, I lived a life where I was always the only disabled person in my social group. There was one other guy with a disability at my high school, but he was year or two younger than me so we didn’t really know each other. Other than that I was always not only the only but the first disabled pupil at all of my schools and colleges. I knew no other disabled people, and knew nothing of disability politics. This did get me in some trouble during the early part of my career. I got in deep doo-doo when I fronted the London area’s coverage of the ITV Telethon in 1992. I had no idea that disabled people were so against charity events like this, and truly thought that I was striking a blow for disabled people by showing that we could give to charity instead of always being the ones who received. This mistake really effected my career, and even today I get people calling me a “traitor” for being involved with Telethon.

This violent response, which included being spat at and physically attacked on occasion, led me on a quest to understand the politics of disability. I tried to get an insight into what was meant by disability politics, and asked my most ardent attackers all about it. I still remember a lift journey with Vicki Waddington that opened my eyes to why everyone was so upset with me. The time I spent working with the BBC’s Disability Programmes Unit was what really educated me about the subject, and allowed me to reassess how actions and words all have political implications when dealing with disability. Well that is actually true of most things, but when you are part of minority it is doubly true.

This was around the same time as the move away from the use of the medical model of disability towards the social one. Gaining an understanding of the differences between the two models made disability politics become clear to me, and I promised myself that from then on I would only be involved with projects that I felt were valid. I feel that I have always kept true to that promise. More than that, I began trying to help the able bodied people I met within the industry to see why there is more to ” doing disability” than just having us on screen.

Anyone who is disabled knows the feelings that comes from watching a program that includes disability, only to find that it also contains one of the stereotypes or clichés of disability too. There’s the “brave” cripple, the “super” cripple, the “tragic” cripple, the “angry” cripple or the “evil” cripple. We’ve seen them all, whether in factual output or dramas and soaps. For the able bodied people involved in making or watching the programs they just see good stories, with loads of all the ingredients that they feel make watch-able TV. But for anyone disabled, we see a continuation of all the attitudes and stereotypes that create the barriers to us being seen as equal. There have been moves to create guidelines for program makers. I was part of the team that created the BBC’s Producer’s Guidelines on Disability way back in the 90’s, but when I spent a period working there in 2008 I was shocked to find they were no longer used. So how can the people in the media be expected to know when they are getting it wrong?

Well this is where I thought I should do something. I found myself having to contact the teams behind any project that I thought had got it wrong. I soon learnt that no one wanted to make TV that portrayed disability negatively or even incorrectly, and it was always done through ignorance. But not always through the ignorance of able bodied people. Many shows had asked the advice and input of disabled people, some well known disabled celebs. But it seemed that they had been fine with the things I had found troublesome. I even found that on the Open University psychology degree that I enrolled in a few years back, that when the course covered the identity of disability it was taught from the medical model, which by the was well out of date. More shocking to me was the audio that came with the course had four well known disabled people discussing their disability and how it effected them medically, with almost no mention of what I thought was the globally accepted social model.

So before I begin advising media companies that they should start being aware that what they shoot, how they shot it and what they say about disability must all fit within a set of rules that strictly adheres to the social model of disability, I must ask you all dear reader, am I right to do so? Do you care if the media has stories of brave disabled soldiers climbing mountains, or TV shows about tragic disabled kids battling their condition, or dramas with angry, or depressed or evil disabled characters? On a purely selfish level, I know that by criticising the industry and what it does I may burn a few bridges, and I will freely admit I don’t want to put the final killing shot into my on screen career by trying to change the way the media portrays disability if most of you feel it isn’t that important. If you would rather just see disabled people on screen, no matter why they were there or what they were saying then I will stop my crusade. I am sure we would all like to see more disabled people in the media, but I think we know that this is coming soon, with the commitment to the 2012 Paralympics. I just wonder if we need to be fighting to make sure they get the chance to be doing and saying the right things too. If any of you have feelings about this topic please add our comments below. It might stop me committing career suicide, or spur me on to fight to make our screens represent the real experiences and desires of disabled viewers and educate the able bodied ones at the same time.

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Who will cry out when they come for you?

Following on from my last blog, it seems that society really is moving towards fascism. Today I watched the Wright Stuff on Channel 5, as I do almost every morning, and sat in horror as they covered the story of a learning disabled woman who is threatened with being sterilized directly after giving birth. I found the story itself horrific, but to then listen to two people, one a parent of a learning disabled child, speak in favour of this practise chilled me to the core. One of the panel had brought up the analogy of the Nazi’s and the parent who rang was very upset by being compared to Hitler. Yet this is exactly what all in favour of this practise are. To use an arbitrary measurement of intelligence to decide who is and isn’t allowed to breed is precisely what the Nazi’s did. This is eugenics to the core. To claim it is for their own good, poor little cripples who can’t cope with being a parent or understand sex does not make it any different. The Nazi’s used this argument too.

So did many countries through out the world at that time. In the USA people of a low IQ were sterilized on a county wide scale. It got so bad that feuding neighbours would denounce each other as simple and this would lead to sterilization. Also people who were considered morally inferior, such as unwed mothers, were sterilized to prevent passing on the moral decrepitude. Many countries in Northern Europe in the early part of the 20th century practised eugenics, and the mainstay of this drive for genetic purity is the sterilization of those deemed to be undesirable to the gene pool. After the 2nd World War fascism and Nazism were denounced as evil. Eugenics was also shown to be incorrect and disproved as a scientific theory. These kinds of practises were considered to be a thing of the past. Yet here we are, less than 100 years later, with a society that is slowly starting to embrace the ideals of eugenics, and so Nazism, again. The disabled are now either worthy of treating like pets and being neutered, or seen as a drain on the hard working tax payer. So we are seen as legitimate targets for treatment that was once seen as unrepeatable.

But were will it stop? Today it is someone with severe learning difficulties, but who will be next? Will it be someone like my wife’s late father, who had epilepsy? That can be passed on to their children, so surely it is only fair to stop epileptics from breeding? What about people like my brother, who is dyslexic? In a modern world were reading is essential to being productive, surely he shouldn’t be allowed to pass his disability on to the next generation? Then we have to consider those people who just aren’t that clever. Many studies show, or can be made to show, that those people who have a low IQ have children who also achieve low academic results. They are not real use to a modern society, so let’s sterilize them. Of course once we get rid of the stupid, the goal posts will move, and what is considered stupid will change. Within a short while anyone without a degree level education will be targeted. Then it will be those under a second, and then those under a first. Then anyone who does have a doctorate or a masters will be unable to breed. Then it will be those who disagree with the ruling government and anyone who does not tow the party line. Then one day they will come for you.

That is the reasons why we must cry out against the slippery slope we are starting out on now. Anyone who claims to be sterilizing another human being for their own good, has no understanding of what it is to be alive. Our society should be moving towards a place were we help everyone fulfil their potential and give support to those who need it. There are many able bodied people who are terrible parents, and many people who are considered to have learning disabilities who are superb parents. But more than that, there is a bigger picture here. I cannot believe we may begin back down a road that ends in camps and gas chambers in the name of what is best for disabled people. Trust me, it will end up there. It might not be Jews this time, but it will be another minority, or minorities, that will be demonized. The Nazi’s started with the disabled, and these acts of true evil paved the way the extermination of millions of able bodied humans. So before you consider this question of the rights and wrongs of sterilization of the learning disabled, remember the outcome may lead to a knock on your door from state police when you are considered not worthy of human rights. If you don’t cry out now, then there may not be anyone left to cry for you!

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Oh, to be an able bodied older woman!!??

I was very pleased to hear that Miriam O’Reilly won her case for age discrimination yesterday. It is time that the BBC’s obsession with youth was ended, but I do feel it is important to point out that however bad it might be to be a female presenter/broadcaster of advancing years the discrimination that they might face is nothing compared to what disabled talent face whatever age they are. Sadly when Ms O’Reilly announced that she was going to sue the BBC a while back she claimed that no other groups would be treated like she had, and included disabled talent in her list of people who had it easier than she did. I was so upset I even e-mailed her and her legal team. But it does just show how little everyone else in the industry understands the truth about disability and the media.

However much the media talks the talk around disability, the total lack of disabled people actually on our screens working as presenters shows the truth. In fact in the last ten years the whole industry has gone back to the position it was in pre 1970’s. The only person working as a regular broadcasting presence on our screens is Gary O’Donahue, who is a journalist on BBC news. And he only got to this position by suing the BBC after they gave a story he had discovered to an able bodied journalist claiming that no one wanted to see a blind reporter on prime time news. Back when From The Edge was cancelled, the powers that be claimed that they wanted to mainstream disability. Yet what actually happened was that while the back room talent was moved to other roles in the BBC, all the on screen talent was dropped. Gary moved to news, and Kim Tserkezie got a role acting in kid’s show Balamory, but the rest of us were mainstreamed to invisibility.

But this was mainly due to the fact that whatever the grand plan was in the board rooms of the BBC, the people who made the programs still felt that disabled people as part of their presenting team was a total no no. I had a meeting in the late 90’s with the series editor of Watchdog, and with my track record working on FTE I would have been a superb addition to the show, but during the interview I was informed that “they’d be no f**king cripples on my show”. Lovely. In a way this level of blatant discrimination is easier to deal with. He was a bastard and was sacked shortly after. The major problem is the less obvious way disability is mistrusted by those who decide who gets to be the faces on our screens or voices on our airwaves.

Just after FTE was cancelled I landed a job as roving reporter on the BBC LDN’s breakfast show. During the interview I had asked that I was always accompanied by an assistant, to carry heavy equipment and help with any access needs. The BBC employed a team of access workers and so I knew this was possible. On my first day I arrived to do my first outside broadcast, only to discover that my “assistant” was a heavily pregnant radio producer who refused to carry anything at all. I fully understood why, but that was no help to me. As it was my first day, and this was a major break for me, I gave in and tried to hump around a heavy radio pack to carry out some interviews. As I jumped off a curb with the pack’s strap round my neck and the pack on my lap, I pulled a muscle in my back and did myself a major injury. The pain was so bad that for the rest of the morning I found myself fainting, yet I still managed to carry out the interview. My wife was listening and had no idea how ill I was until I wheeled through the door when I got home. Yet the next day when I rang to find out how the team felt it went I was told not to bother coming back. I took this to the BBC legal department and an agreement was reached ensuring me a post at BBC LDN once I had recovered from my back injury. During this time it was discovered I had broken my back again, after a car accident I had in 1999. The pulled muscle was actually my spine pulling apart, and the injury was now life threatening. Once the BBC found this out, the agreement was broken and I was back in the wilderness.

By now I was having to take morphine for the pain while surgeons tried to work out how to fix my now twice broken back. Morphine is way too strong of a drug to be able to work as a TV presenter, and with my image most people in the industry thought I was using heroin, so I decided to focus on getting well. So I stopped pushing and searching for jobs in the media. Shortly after I had my spine op, and spent the next few years being very ill. All the while I watched TV and listened to the radio, waiting for the new Mik Scarlet to come along. What happened? Well Ade Adepitan did come through as a major disabled media talent, but even he didn’t exactly become a major on screen presence.

No in the eleven years since FTE, the last of the special interest disability programs, was cancelled and mainstreaming was the buzz word for disability in the media we have not one disabled presenter on our screens. Instead we are still in the position of needing a forum on BBC Ouch to shout our joy at seeing a disabled person on our screens. We might get the occasional person being interviewed on show, or see a disabled contestant or contributor, and even get a short item fronted by someone disabled but there is not one member of what might be called key talent with a disability anywhere on any of our British TV output. So much for more choice in our digital age eh?

So however hard it might be for a women who is of increasing age to get onto our TV screens, the battle they face is nothing compared to the huge number of talented disabled broadcasters out there. Not by a long shot! So if the BBC is going to try to get more representative faces on our screens, let’s hope they focus on all the groups they ignore. I mean I am now an ageing disabled broadcaster, so I cover two of those groups. Gizza job!

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