Right to Die? Right to Live is better!

Posted on April 18, 2013 by Mik Scarlet

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.

Proud to be a Freak!

Posted on September 10, 2011 by Mik Scarlet

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!

The Last Taboo? Pain – Why does it hurt us to admit to it?

Posted on April 13, 2011 by Mik Scarlet

Chronic pain has been part of my life for thirty years. I have always had periods of pain ever since I was born, but after my spinal collapse at 15 pain has been a constant companion. In fact I grew to treat it like a separate entity, that accompanies me where ever I go, one that has moods and throws strops if I ignore it or forget to treat it with respect. Having said that, I do not let this awkward unseen friend effect my life and what I do.

Through out my life I have met other people who experience chronic pain, and have found that they have tried to find their own ways of living with it. The one common thread that ran through all the discussions was they wanted to keep the pain they were in a secret. No matter how much the chronic pain haunted their lives, everyone I spoke to asked me not to tell anyone.

A few years ago I worked with someone, who I shall called X. One day they noticed me wincing behind some filling cabinets, and seeing signs they knew well invited me for a coffee. We sat and chatted about our secret relationship with pain. They admitted that no one in our office knew, and they wanted to keep it that way. To be able to go to work they self medicated with a mixture of morphine, a legal prescription drug, and Amphetamine, an illegal stimulant. At the weekend they took a legal cannabis derivative and fell into a pain free trippy sleep. They were sure that if our bosses found out about how they coped with their pain it would be the end of their career. Years later I met another fellow of the pain, I shall call them F, and they coped with it in a very different way. They swore by alternative methods, and found that some worked to great effect. They also asked me to keep their secret.

In the past I have always tried to keep it quiet, and have even over compensated for something that no one else knew about. During my years working with on the BBC’s From The Edge program I tended to be considered their “action cripple” and was asked to do the items that involved doing crazy things. I always said “Yes”, even though I knew they would cause my pain to flare up to almost unbearable levels. I could easily have turned the job down, but felt by doing I would be letting pain control my life. I never told a soul.

As I get older I no longer feel the need to hide anything. As I tend to admit that I have issues with pain I keep finding that so many people I know have similar problems. They nearly all want it kept a secret. What is at the root of the desire to hide how much pain we are in? Part of it is not wanting to conform to the stereotype that disabled people are sickly and weak, but this is a secret kept from everyone, even other disabled people. Another factor is that look of sympathy that we get if we do admit to it. Recently I saw an old colleague from the DPU and we had a chat about the old days. When I told them about the amount of shoots I went on while in agony, I saw that look. I also wonder if we are ashamed of the pride we feel by fighting our pain. I mean the world around us seems to buckle under a head ache yet we battle through in agony. See, we’re tough. I know how great it makes me feel mentally when I do something that my pain should prevent me from even thinking about. So maybe I still an action cripple, just an ageing one.

Last weekend I met a gang of wheelchair using action junkies and one by one they all admitted that they had issues with pain. These discussions led to them all admitting that doing adrenaline fuelled stuff was their version of self medicating. One of the great parts of meeting these guys was being able to talk about pain openly. Pain and embarrassing hospital stories, but that is another blog.

Whatever the reason, chronic pain seems to be one of the last taboos of disability. Until those of us who live with it feel we can come clean, we can never really be ourselves and if we do come out with the chant of “in pain and proud” then I think we’ll find that we aren’t as alone as we imagine.

Pride… and Prejudice.

Posted on October 19, 2010 by Mik Scarlet

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.