Monday, 28 February 2011

Haunted by Heritage

In the last week I have found that my life is being massively impacted by the desire to maintain history in my area. Camden does have many areas of historic interest, and a large number of buildings that are listed, whether that is as a whole or features of special historic value. I really believe that it is important to save and preserve this our history, but do feel that at the minute heritage is trumping other important factors unfairly.

On Thursday I visited a disability event at a local venue, but found that it had various problems with access. When I passed on my comments to the manager he claimed that due to the building's listed status they couldn't do any more than they already had. The next day I went on a site visit to a venue that was going to host an event I had been asked to present the coverage of. I must admit my heart dropped when the company that asked me to present for them told me where they were filming. I instantly knew it was an old building with loads of stairs to a warren of different levels. So I made some enquiries to as to what access provision might be available. I was told that trained staff would make sure I could get around the site.

This was not really the case. The guys who lifted me up and down flight and after flight of stairs obviously had no training and I really felt I was taking my life in my hands, or putting it in theirs, to even consider trying to take to job presenting from the venue. While I was shown around by the lovely manager and her assistant, we discussed how inaccessible the building was and how it's listed status made it difficult to remedy. I could see her point, but didn't see any evidence that anything had been done at all. Of course, even though I give access advice to businesses like this, I must admit I found solutions difficult to come up with.

But that's not the point of this blog. Surely if English Heritage is going to give buildings listed status, then don't they also have some kind of duty to ensure that they give each building guidelines on how accessibility can be built into the site? I don't mean dedicated access consulting, with a full plan of works to be carried out, but somewhere for the owners of the building to start from. Just an understanding of what can and can't be done would do. But even if EH feels that they are not the right people to give this advise, they should make sure that the legal requirements of access, health and safety and fire regulations are fully clear to all concerned.

Now maybe they actually do this, and history, heritage and listed status is just used as an excuse by owners of these buildings to not have to spend what can be considerable sums of money on access. I know that many venues see this expense as hard to justify, as they claim they see very few disabled customers. Of course the reply to the that is, if your venue isn't accessible then how could disabled customers use it? It's the chicken and the egg problem that is easy to answer. And trying to retro fit accessibility features into old listed buildings is always really expensive, especially with the rules that EH stipulate.

That is the real root of the issue. Money. The costs of owning or running a business in a building listed by English Heritage are already made higher by that listing. Once the building or it's features are listed finding access solutions become harder, and purchasing and installing them shoots up in cost dramatically. I truly believe it is unfair to place that cost entirely on the buildings owner, as listing a building is saving the heritage of the country for the country as a whole. So surely there should be some financial help from the country? This would also mean that so many more historic buildings would be open to visit and use to disabled people. At the minute, a listed status is such a great block to access works that I am finding local groups in Camden are trying to gain it to prevent access provision being carried out by some of my clients. I do love the fact that there are people who feel that their right to live in historic surroundings is more important that my right to do the same, with the same ability to experience all that the area has to offer. But then they probably want to keep the historic theme going, and put us all in institutions or on hill sides to die. Nice.

I don't know what the answer is. At a time of belt tightening everywhere I doubt that EH will suddenly find a pot of cash that will help fund accessibility for listed buildings, or their owners will be able to find a stash of money to make their buildings inclusive. But we do need to start a conversation with English Heritage, fans of historic buildings, their owners and anyone who feels access is as important as history with the hope of finding a solution that keeps everyone happy. There are solutions out there, but we all have to work together to find them. Because otherwise it will end up with a series of legal actions and the only people who win then are lawyers.

Monday, 21 February 2011

Yummy, hospital food in my tummy

I found myself having to stop watching the C4 dispatches program that is on right now to write my story of hospital food. Tonight's program is dedicated to how poor the quality of the food you are given is during a hospital stay. For details of the show visit

Dispatches - The Truth About Hospital Food

Now I have had many stays in hospital over my life. When I was 15 I spent nearly three months in a terminal ward at the National Hospital for Nervous Diseases in Queens Square, London. This ward had it's own 24 hour kitchen and the food was superb. The quality was maintained as it was understood that every meal might your last and so every patient was fed whatever they wanted. Luckily I did not die, but was very well fed during my stay. I then moved on to the RNOH, in Stanmore. Now here the food was not so good, but was still edible. The food was cooked on site and was created to ensure that each meal was balanced and healthy. I must admit it wasn't as good as NHND but luckily the wonderful staff who handed out the meals made sure we had plenty of fun stuff, like ice cream and biscuits to make up for not always eating everything we were given. The main reason why I did not come out of hospital thinner than when I went in was all the steroids I was given that helped me have a rapid recovery from my life threatening illness. I left hospital after nearly nine months and went home, to lovely home cooked food.

After ten years I returned to the RNOH for a kind of spinal MOT. After only three days I checked myself out, entirely due to the awful food. By now I was a vegetarian, and found I kept being given meat in my food. They even managed to make awful toast at breakfast. I expect it to be coldish, but wet and icy. The milk was off every morning, and so I couldn't even stock up on the one meal that you would imagine was impossible to ruin. But however bad this stay was, it was nothing compared to my last visit.

In 2003 I had to go into the RNOH to have major spinal surgery. There was no leaving early this time. I had the operation after less than one of day of being in hospital, and spent two weeks in intensive care afterwards, throwing up everything I tried to put in my stomach due to a reaction to the anaesthetic pre-med. When I finally was moved onto the isolation ward I was well enough to eat. You would have thought that after so long not being able to eat, and with such major surgery to recover from that ensuring a healthy food intake would be seen as essential to my full recovery.

No such luck. I soon found that the only veggie option was salad. Cheese salad. This comprised of lettuce, grated carrot, gated mild cheddar cheese and a sachet of salad cream. Occasionally it would be a jacket potato, which would be either under done or just soggy with a few beans or yet more grated cheese. The breakfast was OK, but otherwise I kind of starved. I started loosing weight at an alarming rate. By this time I had been put in a full body cast, to hold my spine still. Within two weeks I had lost so much weight that I could slip one of my arms down the side of my cast, and could almost turn round in it so I faced the wrong direction.

But not only did this happen, but it also caused problems that still haunt me even now. You see my stomach was so empty that all the prescription drugs I was being given, such as very strong morphine based pain killers, anti-inflamatories and antibiotics to name a few, all began to burn through my stomach lining as they dissolved. They also caused terrible constipation, which is no fun when you are unable to move and are not eating too much anyway. So I was also given tons of laxatives. At this point I must apologise to the poor nurse who had to help me deal with the poo-cano (a volcano of poo) that the over prescribing of laxatives caused. The horror!

Anyway, after three months of this my wife insisted I was sent home. She then looked after me for the six months recovery period and fed me very well. But this is where the problems I now have with my digestive system arise. After being starved to within an inch of my life, and being given hand fulls of pills that were eating way at my stomach lining, coming home to good healthy food while being forced to lie on my back has caused my stomach, duodenum and bowel to become a nightmare. I have a condition called Barratt's Oesophagus, which is where you throat becomes like part of your stomach producing stomach acid, and was caused by a mixture of the starvation, drugs and laying on my back for so long. It will not go away, and may lead to cancer of the throat in the future. Whatever it may mean tomorrow, I have to take super strong anti-acids for life, and these stop me digesting my food properly. This would be bad enough if it wasn't for my ulcerated duodenum which occurred thanks to all those pills without food.

That saddest thing is I was always really lucky to be a paraplegic who had full control of his bowl and bladder. So while the spinal surgery saved these vital bodily functions, the awful food has led to my digestive system being about as knackered as it could be. It could even lead to serious illness in the future.

So it is vital that hospitals understand that the price of food is not the key thing. What you eat in hospital should be seen as important as the surgery. What is the point of advances in medicine if patients are going to be fed food not too far removed from that served in Nazi death camps? I know that all the treatment I have had to explore my digestive tract and to fight the effects of months of starvation during my last hospital stay has cost the NHS a pile more money than how much it would have spent on serving me something I could have eaten. I am always amazed at how the surgical teams in hospitals don't complain about the false economy of crappy food. What's the point of them working so hard, only to watch their great work undone by penny pinching on something as simple as food? In my case the surgical team installed of £250,000 titanium during a 15 hour operation and while my back is nicely fixed, but I am still fighting to get on with food. How stupid is that eh?

Tuesday, 15 February 2011

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!

Monday, 7 February 2011

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.