Friday 29 October 2010

Cold Comfort

I've spent the last couple of days laid low by a cold. Whenever I am stopped in my tracks by something so small as the cold virus, it makes me realize how obvious that we evolved rather than were created. Why would anyone, let alone God, create a world with so many mistakes and flaws? What role does the common cold play? What role does any disease or illness play? Why do we have mistakes in our genetic code that makes sick or disabled?

The only answer is that it is to do with evolution. The cold virus evolved along side humans and so it effects us. Not enough to kill us, like many other diseases, but just enough to allow itself to reproduce and infect others. During this process it mutates so our immunity that will build up when we are laying in bed feeling crappy has less of an effect on the virus allowing it to infect us again next year. Obvious.

Our genetic code creates mistakes that lead to illness and disability as this is the same process that allows evolution itself. Imagine that once upon a time a horse was born with a deformed longer neck. All the other horses would have seen a disability, but this long necked horse could reach higher leaves on the local trees and so was healthier than the other short necked horses. So when it bred those horses that were born whit the long necked trait could also eat those leaves, were stronger and so bred more, passing on a the mutated neck gene. And suddenly the Giraffe was passed into existence. Obvious.

But what always makes me wonder, is why religion doesn't embrace science? My wife is studying Physics at Uni right now, and the amazing things that led to the creation of everything are dazzling. While I see it as random luck, even an devout atheist like me can see that it would be easy to see a guiding hand in the forces at work over the billions of years it took to get where we are today. Yet more and more religions all over the world fight against scientific discoveries. At the same time they worry about falling attendances. Surely these discoveries make the universe more amazing, and that might lead more people to seek answers to why it is so amazing? So why deny evolution or any other new theory to how everything came to be here? Why not admit that God must want us to understand everything and embrace the fact that we above all other animals have the ability to theorize and understand?

Anyway, that's what is going through my head while I cough and sniffle on my sofa watching Star Trek. I'm so ill I didn't even mute the theme tune to Star Trek Enterprise. That theme tune alone is more proof there is no God.

Tuesday 19 October 2010

Pride... and Prejudice.

In my last blog I wanted to further explore some of the press I had done around my choices not to go ahead with trying to walk. I was shocked, and a little saddened by some of the replies and comments I received in reply to that blog.

The idea that disabled people can live lives that able bodied people might envy seemed to upset some disabled people. Yet surely the disability movement has spent years trying to get across the fact that disabled people deserve the same chances and rights as everyone else, and if given them disabled people would be able to experience life just the same as the able bodied. So why shouldn't some able bodied people be envious of some disabled people? Disability is not a reason why anyone's life will be less in some way.

Now of course many disabilities come with medical conditions. I have a spinal injury, and so am classed as Paraplegic, but the injury caused some nerves to be trapped in scar tissue. This leads to periods of chronic pain, and the pain killers I have had to take has led to problems with my digestive tract. These do disable me, but they are really ongoing medical conditions. Using a wheelchair will never make my life less that it would have been if I could walk. I think it is essential to make sure we understand the difference. I never wake up thinking "I wish I could walk" but I do wish "This pain would stop". Yes, the pain is tied to the disability, but it is not the disability.

I hope that everyone agrees that disability as described by the social model is the way it should be viewed by society. So I am not disabled by my inability to walk, or by my pain or anything else but by the barriers put in my way by the larger society. It's not being in a wheelchair that makes me disabled, but the steps into a building. That goes for all of us disabled people. In fact it goes for everyone. Everyone gets old, or sick. In a world that was shaped by the social model of disability and so was fully inclusive, many of the issues that they will face would not exist. It wouldn't matter if they had trouble walking, or seeing or hearing, or needed a seat or whatever. The solutions would be built into every part of our daily life and the world we all lived in. Any medical issues would be just that. Separate and something to be treated.

At a time when the disabled, the elderly, and the poor are going to be a the sharp end of budget cuts, and when many people in society really believe that assisted suicide and mercy killing is a valid way to go, we disabled people must see that we need to be vocal. We need to shout how we are capable, and can experience anything we want to, if we are given the chance. We have to be proud of how we have got as far as we have, both as individuals and as a group. In 100 years we have fought to go from being shoved into institutions and pitied or feared, to living in the community and having a voice and shaping our own futures. We have made amazing strides forward and must keep on fighting to make sure we do not stumble and loose ground.

My story is a strange one, I admit. Not many disabled people have to make the choice I have recently, but as science advances more and more will. That decision will be up to the individual but I wanted to explain that being cured is not the answer to integrating disabled people. To integrate a minority, the answer is not to correct or eradicate the minority. If we go down that dark road then why not make gay people straight and black people white? Or just wipe them all out? Sounds familiar to me. Who tried that already?

No matter how much a disability, and it's medical problems, effect your life, or how much you may sometimes feel that it gets too much, every disabled person on this planet has the ability to live the kind of life that would make able bodied people envious. We can find love, feel fulfilled and be happy. I know how few able bodied people manage to achieve that. Yes it can be a real struggle, but it is for everyone on this planet. It's the extra barriers that are put in our way and the ignorance of what we can achieve that are the enemy, not our disabilities.

Wednesday 13 October 2010

A Happy Cripple - Shock Horror!

This weekend the Mail On Sunday ran an article on my choice to not undergo a series of operations and years of physiotherapy after my last spine operation returned the feeling and function to my legs. Since it was published I have done a couple of interviews on radio about the subject and thought you all might like to read the MOS article and listen to the interviews. Here are the links -

Mail On Sunday Article

Talk Radio Interview - Parry & Graham with Wickes

3 Counties Radio Interview - Breakfast Show

I would just like to correct a few mistakes in the article, that have been carried through to the interviews. Firstly I was born in 1965 (never lie about my age, just never see the point), secondly I went into my chair at the age of 15, and thirdly I have already undergone the surgery that gave me my legs back. The operations that I was offered to see if I could walk again are to repair damage that years of being a wheelchair user has caused. I would need a right hip replacement, then a new knee and ankle. The hip surgery would mean two months with a stretching device fitted to an open wound on my hip, as I would need to move the muscles, ligaments and nerves in my hip to allow the new hip to fit correctly. So after three huge surgical procedures, and all the recovery time they would bring (not to mention that each one might go wrong and cause me to loose my leg) I would have to go through between 5 and 10 years of physiotherapy. OK, some people might still think it was worth it, but even then no one could swear I would be able to walk. Oh, and I would need the replacement joints replacing every five to ten years too. I think most people will agree, not that much of a difficult choice.

The reason why I wanted to publicize it was the fact that so many able bodied people just could not understand why I wasn't going to go for it. I also wanted to voice the fact that disabled people can have fantastic lives, and that we do not all dream of being cured. I have been amazed by some of the responses I have received since all this went out, including the number of people insisting that I better not be getting any benefits if I am choosing to stay disabled. Of course by not going through all this surgery I am actually saving the NHS millions. The hip was going to cost £150,000 - £200,000 alone, and that's without the cost of the medical staff, hospital stays and other costs. Scary to think that some people see the point of this story to be the cost to the "tax payer". I think it has wider implications than that myself, but hey who am I to argue?

I don't think the press has finished with yet. I have been contacted by a few other publications and media shows for interviews, so hopefully this will lead to me getting across the truth behind disability. The main reason why it effects our lives is not because we have something "wrong with us" but because that world isn't set up to allow us to have the same chances as the "able bodied". Even with those barriers, we live lives that are the envy of most AB's and many like myself see their disability as something that set them free.

So watch this space.

Wednesday 6 October 2010

Anatomy Of Addiction

While I am out of the woods on the pain front at the minute, the drugs I took to cope with my last episode has left me thinking about addiction. You see I am currently going through withdrawal from high doses of Codeine, which is a medical grade drug and similar to Morphine. As we all know Morphine is what the medical profession call Heroin, so this type of pain killer is highly addictive. So I hope you can imagine what fun I am having right now. If not, let me explain.

We currently live in a society where the word addiction is used a bit too freely. People claim to be hooked on shopping, sex and even chocolate. Now I don't want to be too insulting about these claims (actually I do but I won't) but at the most these people are addicted to the rush gained by indulging in their "habit". It is the same as people who claim to be gambling addicts. The endorphine rush gained by risky behaviours like gambling is greater than that of shopping, but it is still only enjoying the chemical high that endorphins release. These types of addiction are really just a case of not being able to resist something that is enjoyable. Even the crushing tragedy of gambling and the damage it does to families is only fed by the need for the rush and misguided belief that "this time I'll win". Whatever people in the field of trouble gamblers say, it is not the same as needing a substance that alters the way your body functions physically.

Using substances such as drugs and alcohol over a long period lead to a change in the way the body works, and mean that any user reaches a point where they need that substance to function normally. While recreational drugs and alcohol are things you normally start taking for fun and then fall into addiction, pain killing drugs are something that you have to take. Annoyingly they are also very addictive. Really really annoyingly the way they manifest this addiction is to lessen your ability to cope with pain and when you want to come off them they make your brain create false pain. So I end up with bad headaches and aching wrists. Mostly. Of course many other "phantom" pains can manifest themselves. Today I have stomach cramps. But that could be part of another fun side effect of coming off Codeine, tummy upsets. Opiates bung you up big time, but as your body gets used to them your body returns to normal. When you come off them you can get all manner of stomach hassles. Sometimes they can be as violent as the poo the bed scene in the film Trainspotting. Nice.

Now every character in Trainspotting took drugs for fun, well at first. Whatever your feelings around recreational drug use, withdrawal is pretty much the same. The body needs the drugs to maintain a normal function, and so you have through the discomfort of the resetting of you body's systems, as well as whatever your body throws at you to get you to take the drugs again. That is what addition is. I think that society needs to focus on this part of the drugs debate when discussing how to make drugs less appealing. The best argument a drugs is that everything has a balance effect. The highs that drugs bring means that the lows will be equally dramatic. When I take my pain killers I know that the effect of lowering the amount of pain, which is nice, will have an equal effect when I stop taking them, which is not nice. But you won't get one effect without the other. It's the same for all physically addictive substances. Luckily I have been taking various types of pain killers since I was 15, and now know what to expect and how to best fight those effects. Not saying it's easy but knowing what is coming does make the process of withdrawal less scary.

Anyway, I have a around a month to go and should be back to being clean. Then all I have to do is hope that my next bought of pain won't happen too quickly. Fingers crossed eh?