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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Untermensch Geschlecht Verboten – and other stories worthy of the Nazis

It seems that the world has been taking crazy pills. Firstly we have the story of how the people who are leading this country taunting a fellow MP by pulling faces at him… and why? Because they were laughing at the way he was talking, but why did he talk in such a way that might cause our leaders to feel the need for some piss taking? He had Cerebral Palsy. Yes, our MP’s were laughing at a cripple. Even sadder than that, for me, those laughing were Labour MP’s. Now if the party that is meant to stand for equality for all is laughing at the disabled, then this really shows were this country is at. After the event all concerned cried ignorance, claiming they stopped once they realised he was disabled. Maybe this shines a light on the fact that the House of Commons needs the way it functions to be totally overhauled. Time the people we pay large sums of money to run our country the way we have decided, via the democratic system, started acting the way they would expect the wider community should. If this happened anywhere else all concerned would be in court under the Equality Act, and would be found guilty.

Talking of court, the most crazy story that kicked me in the teeth this morning is that of Alan, who has been stopped from having sex (for ever) by a court ruling. It was for his own good, as he had “moderate” learning difficulties. Now while all the news stories about this claim that the details are sketchy, to me I don’t care. To be part of a society that now feels it has the right to stop someone enjoying a sex life because they are disabled is wrong. The people involved in helping this guy live independently should not have the right to prevent him from enjoying something that they themselves can do freely. Their job is to support him and help him be safe and secure, and assist him in his life choices. Instead they took a court case to prevent him from ever having sex again… and won. So now we will be spending huge sums policing this guy’s sex life. So at a time when those in power are trying to find ways of cutting the money spent on assisting disabled people to live with dignity, others are taking away rights that society surely sees as intrinsic.

Finally we must not forget the strong lobby towards allowing state sponsored murder, in the name of mercy. Euthanasia or assisted suicide is slowly being perceived by the wider society as something we should allow. The Commission on Assisted Suicide is currently examining whether the law should be changed to permit the medical profession, who sear an oath to ” do no harm” before entering the profession, to end the life of people with chronic and terminal conditions, and I am saddened to say that even my own parents are in favour of a change. I know it is because they are getting older and are afraid of how they may die, but it shows that even people who have a personal interest in those who may end up being deeply effected by allowing assisted suicide find it hard to deal with their own fear of illness and death. I know from my own experience, that many of the doctors and surgeons I have met consider the quality of my life to be low enough to merit being ended, as an act of mercy. I have had to fight to make them understand how fantastic my life is. All they see is someone in a chair, paralysed and in chronic pain, that reminds them that sometimes fail.

So we are now in a society where those in power mock the disabled, bar them from the right to enjoy sex, see supporting them financially as no longer fiscally possible and are considering the concept that ending their life would be an act of mercy. Big Brother would be proud. So would Adolf Hitler. Let’s face it this is way that the Nazis started out. It was the disabled that they targeted first, and these steps were all ones taken under that regime. We are so close to going down that road again, without even noticing. Already we have a leader claiming that multiculturalism had failed, and that everyone here has to be more British. How long will it be before groups of thugs roam our streets targeting those who are not British enough? Oh hang on, it happened this weekend in my home town! Next step, camps to imprison enemies of the state and undesirables. Then it’s extermination and the SS.

So wake up everyone. The way we treat those who are different from us holds a mirror up to the true nature of a society. We must rise above our own fears and wants, and try to be the kind of people that we should aspire to be. Then our society will be the kind of place we all want to live in. And where we can live, free in the knowledge that there won’t be a knock in the door from uniformed state police who have come to stop us from having sex because we have been deemed unfit to be allowed to do so.

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Television & Disability – The Mik Scarlet Lecture – Part 1

Last night watched the Huw Wheldon Lecture with Dr Brian Cox OBE. As my wife Diane is currently studying for a degree in Physics, and so I am becoming interested in science by osmosis, we tend to catch whatever programs he is involved with. Not only is the Coxster one of the sexiest men is science (as I am told repeatedly by Di and her friends), but he is one of the key movers in making science more popular and understood by society. When I saw he was giving a lecture on how science should be portrayed on TV I knew I had to catch it. Finally a program about science where I would be as knowledgeable as my wife.

Of course Brian, and as someone who regularly visits my front room I feel I can call him that, didn’t let us down. The lecture was fantastic explanation of how good science programming should be made. Let’s face it, Brian Cox is one of the leading Physicists in the world today, The Wonders of the Solar System is one of the best science shows ever made, and with the help of his wife Gia who works in the media, Dr Cox (more formal now) is one of the best people to explain the direction that science TV should be moving.

Royal Television Society Lecture – You Tube – Part 1
Royal Television Society Lecture – You Tube – Part 2
Royal Television Society Lecture – You Tube – Part 3

After watching the show, I found myself wishing that someone could do the same for the direction of disability in factual and documentary TV. As I can’t get a TV company to give me 40 minutes of air time, I shall try to address how TV should deal with disability in blog form.

The first question that’s needs answering is that of language. Whatever the story being covered, what language is used changes the way that story is perceived. Let’s take an example. Say a local news station ran a story about a disabled child raising money for charity. Now having seen this story many times we all know that words like brave and courageous will pop up somewhere. The problem with words like that is context. If the child had done something that anyone might call brave or courageous, such as climbing a mountain or a parachute jump, then maybe such words might be OK. But if the child has just put on a jumble sale or done a sponsored swim then these words imply that the fact someone disabled has done these things is some way different that if it had been an able bodied child. This is not the case. The story should be about what a thoughtful child this was, and almost ignore the disability. Why? Well, the focusing on the disability makes the good deed a side story to the fact a disabled child can actually do things. It continues a belief that anyone disabled is less capable, and that this disabled child is uncommon. There is also a more subtle issue. It creates an impression that any disabled person who does not push themselves to do such uncommon tasks are in some way less. As disability is already thought of as making someone less of a person, this kind of language entrenches this attitude. As I have already said, the focus of the story should be on the fund raising and not on the disability.

This focus also carries over to the stories about people fighting illness or coming to disability. Those who are in this position are not brave or courageous. Actually most people will fight and try their hardest to cope. This is demonstrated by the fact that so few people do kill themselves or pop off to Dignitas. Of course it is hard, and I do understand that it can help your state of mind to think of yourself as brave during a dark time. But I know from personal experience that it can have equally dark effects.

When I went into my wheelchair, I was always being told I was brave. It appealed to me to think of myself that way and helped me cope. But whether you are ill or newly disabled or your disability has changed in some way, you will come to a point when it does get to be too much. When it does, you find yourself not only depressed by the situation you are in but also by the feeling that you have let everyone down by not being brave any more. In fact the lack of bravery can make you feel like you would be better off not being around, for all concerned. It happened to me when I 17. I had been in my chair for 2 years, and had coped very well (and bravely) with the illness, the surgery and readjusting to life. Then one day I found myself wondering would I ever have a girlfriend. I was sure no one would want to be with a cripple like me, and I crashed into a depression. Then I felt a total failure. Not only was I going to be alone for the rest of my life, but I was also a coward. I considered killing myself, and even prepared everything. I cut the cord of an electrical appliance, plugged it into a socket, ran it to the bathroom and ran a bath. I was going to get in, and drop the cord into the bath. It was only the fact that my parents would be the ones who would discover me that stopped me. Typically, within a few weeks I had a girlfriend and I realized that the whole “brave” thing was foolish.

At that time disability never seemed to be on TV, so this was the result of just the language used by my family and friends. We now see soldiers coping with horrific injuries and disabled sportsmen and women as strive to be the best at their chosen sport, continuously being called brave and courageous. I know that it will be having a much greater effect. Especially as these types of people have mind sets that revolve around performance and excellence. Imagine how it will effect them when they feel that they hit a low point, and have become less by no longer being brave.

Not only does it effect those who are disabled or sick, it also creates an attitude towards disability and sickness that has an effect on all society. Anyone who is not disabled or sick is sure that they could not be that brave, and so they begin to think about the subject with fear. They are sure that if it ever happened to them they would rather die, mainly as they doubt they could cope. If the media showed that the majority of people face such a life changing event in the same way as these soldiers and Paralympians do, it would make disability much more accepted and understood.

The reason why I know people would cope is because it’s why humans have evolved to be the most advanced life form on the planet. We adapt to pretty much everything that’s thrown at us. Also it would mean that when these soldiers and sporty types hit a moment when it gets too much they won’t find themselves feeling like a failure for not continuing to be stoic.

Now that’s a lot to read through, so I will stop there. Next time I will look at words like tragic and examine the subjects of news stories and documentaries. So stay tuned.

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A visit to Cambridge – what a difference a day makes.

This week my wife Diane and I spent a day in Cambridge. We went there to have a look round as it is one of the places Diane would like to study for her doctorate in Physics. It is a lovely city and we had a great time wondering round it’s historic streets and strolling through it’s colleges. One of the high points for me was the Fitzwilliam Museum. It’s funny, that while it is a smaller museum than many of the ones we visit here in London, the quality of it’s exhibits are superb. The Egyptian rooms were especially great, filled with wonderful artefacts that gave a real insight into what life was like back then.

While we were walking around the pottery and ceramics rooms we met a friendly and charming guide called Sam. We started talking and he gave us a real insight into what studying at Cambridge would be like. He had studied there for his degree into Philosophy, and he was about to go to Durham to do his masters. Funnily Diane had just come back from studying up there and so the conversation deepened. At some point Sam asked me what I did, more out of courtesy I think as I had obviously less to say in this conversation of academics – being the “blonde” in my relationship – and so I gave him a potted history of Mik. Of course he had never seen me on TV, but then I guess that at no point in his studies did he feel the need to combine Philosophy with kids TV or disability magazine shows. However when I started talking about my writing we found that his Philosophy studies and the subjects I wrote about crossed over.

Eventually we got to the big Philosophical subject of the minute for disabled people, assisted suicide, euthanasia and mercy killing. We chatted about what society seemed to think, what I felt and what Sam’s studies and beliefs had led him to believe about the issue. He was very anti-abortion, and while both Diane and myself are pro-choice, we soon reached an agreement that the problem with this issue of terminating life was lack of information. Sam thought that abortion was like destroying beautiful objects, like the ones we were surrounded with. While the status of a foetus could be open to debate, it was still something to be cherished, and so should not be destroyed. We felt that while this was correct, the person carrying the foetus should have the choice. I brought up the problem of aborting disabled foetuses, and how I believed that this was wrong, and realised that I might be arguing for both camps. This made me see that maybe my stand point might be wrong, and that I needed to re-examine where I stood on abortion. I hope that our discussion made Sam revalue his more pro stand on euthanasia too.

The main thing to come out of this exchange was the realisation that disability and it’s ramifications are not part of academic study. While there is the subject of disability studies, and it is included in some other subjects, there isn’t enough literature on the topic to ensure that any discussion around disability can be carried out from a position of knowledge. I know from my own experience that some subjects are still teaching theories about disability that are years out of date.

Up until earlier this year I was taking a Psychology degree, but when we got to the area of the psychology of identity I found I had a problem. The way identity was explored was using the identity of disability. Ha, I thought, this will be an easy module. As I began studying however, I found that the only model of disability being used was the medical one. Time and time again, disabled people were described and described themselves via their medical conditions. While I understood how a subject like Psychology would have an interest in the medical aspects of disability, I could not see why the social model and how society makes our physical differences disable us was totally excluded. Surely when exploring the psychology of identity the two models were of massive importance, especially as they have changed how disabled people see themselves, which is pretty much what identity is. When I raised this issue with my tutor, well lets just say I am no longer of uni.

But of course, if there are a small number of publications that explore disability at an academic level, how can academia start to understand how disability colours so many areas of study? Not just the obvious but everything. So many historic figures had disabilities, yet we hear little about that. Julius Caesar was an epileptic, and his desire to hide this from the Roman people led him to form close bonds with all who worked for him. Hence why he treated them so well, and why they felt such a bond with him. This was one of the reasons why he rose to be the leader of the Roman Empire – and he is just one figure of many. (Any TV producers out there, I have a TV show I have researched on this subject that would be a fantastic show). How has disability influenced the world and how we are?

With this question in mind I am planning to research and write a book exploring disability and it’s many facets. I want to cover the many issues surrounding disability and gather views and experiences of disabled people through out the country and of all ages. I want to create a reference point that can be used by everyone to explore how disability effects the world we live in, and how it effects us. So if there is anyone out there who would be prepared to be interviewed by me could you please contact me via my website? The book is in the planning stages but if you feel you would like to contribute, please just drop me a line and we can take it from there.

www.mikscarlet.co.uk

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