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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The Old "Makes You Stronger" Line?

Sorry for not finding the time to put my thoughts out there into the internet recently. I have been so stupidly busy that time was something I didn’t have. Of course I will not complain as busy means financially viable, and in today’s world that is amazing. But yesterday I took an afternoon out of my hectic schedule to attend a meditation class for people who suffer from chronic pain.

I have made no secret of the fact that pain is part of my world, whether it’s the back ground pain of my spinal injury and the nerves trapped in the surrounding scar tissue, the various bone issues I have thanks to the decrease in density that goes with not using your legs, the ageing process that is hitting home in my shoulders or the neuralgia that strikes every now and again. It is the neuralgia that made me want to find a different coping mechanism, other than the usual pain medication. When it hits, the pain makes me a little crazy and can get too much to cope with. Pain killers won’t touch it so I thought I would search for another method of coping, and found a system called Mindfullness. I won’t explain it to you, mainly as I have only one session and am still trying to learn the method.

Instead, I wanted to explore my feelings on pain. I can’t mention any of the other people on my course but hearing their stories made me realise that pain is all relative. Some had obviously serious health issues that caused pain, other had conditions that led to pain that was unbearable for them but less than others. But everyone there was trying the class as they had reached a point where their pain had got too much. So whatever that cause or level of pain each member was going through, we were all in a similar place. Pain is like that. All relative. There is no level at which you can’t cope, as everyone has a different ability to handle pain. And there is no right way of coping either.

While we were discussing our stories one person stated that they hated the Nietzschean idea that what doesn’t kill you makes you stronger, as chronic pain is something that doesn’t kill you and doesn’t make you stronger. That funny thing is that I have always felt my pain does exactly that, makes you stronger. But maybe that is just the effect of my method of learning to cope with it. Treating it as an external force that needs to be beaten. I am the boss of my body, so it cannot be allowed to dictate to me how I live. It might be a typical masculine way of coping, but it does mean I have learned to beat a high level of day to day pain.

During our session we did a “mental body scan”, which involved meditating on our bodies and exploring them with our minds. This was a very unpleasant experience for me, as I had forgotten how many places on my body hurt. A great deal of my pain had become part of my background day to day life and I had stopped noticing it. So this exploration of body opened me up to a pain I had learned to cope with, and led me to spend the rest of the day in great discomfort… and I still am today. But it proved that you can learn to cope with pain and that ability does make you stronger. It also showed me that the reason why some of my pain still gets to me is that this that it is the straw that breaks the camel’s back, so to speak.

The thing that stuck me is that pain is something that is invisible but that can eat away at your day to day life. With the current obsession with getting people off sickness and incapacity benefits, those people who suffer chronic pain are among those most effected. Yet they really are entitled to support and assistance. While I may be able to cope with most of my pain, I have had it since birth. Even I have days where it effects me so much I can’t work, especially the “going off to work in an office or factory” type of work, so those who develop pain during their life cannot be expected to be able to carry on with a “normal” life. They need help to cope with the pain and support while they do.

So if you have pain in your life, don’t worry. You can learn to cope, and you can rebuild your life. For the rest of you, when you next hear all the rubbish the government is spouting about getting people off benefit remember that some people need and deserve those benefits. But more than that, remember that illness or disability could strike you tomorrow, or even later today, and that’s why the system exists. Make sure that if you ever need it, it still exists for you to call on.

Right, I’m off to relax and rebuild my coping strategies ready for another full day tomorrow. No rest for the self employed eh?

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