Saturday, 31 July 2010

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.

Tuesday, 20 July 2010

Here we go again... or watch out for the slippery slope.

Yesterday's ITV national news at 6.30pm ran the story of Tony Nicklingson, who, after having a stroke, suffers from "locked in syndrome". This means while is mentally he is fully functioning, physically he is only able to move his eyes and head. He cannot speak but communicates via a spelling board. The story revolved around the fact that he is going to court to try to get the law changed on mercy killing. Not assisted suicide as he is too disabled to be able to do anything himself, and so can play almost no part in his suicide. This would make helping him to die a mercy killing, which would be murder as the law now stands.

The presenter and the item reporter talked about how Tony had been a keen rugby player and the life and sole of the party but now could do none of those things, their voices trembling with emotion. His wife read out a statement that Mr Nicklingson had written with her using his spelling board. In it he told how he was "fed up with his life" and how he was not thankful to the doctor who saved his life.

Now at this point in the blog I originally went off on a vitriolic rant but have decided to try be more measured, both to make sure I get my point across and to avoid legal action. However if moments of anger do creep into what I write, please forgive me as this is a subject very close to my heart.

Every time I see one of these people campaigning to be killed, whether it be assisted suicide or mercy killing, I am stunned. Stunned and then filed with rage. Are they so selfish that they cannot see the bigger picture? Do they care so little for anyone else, or know so little of history that they can only see their own discomfort? Of course people like Mr Nicklingson have been handed a crappy hand in life, and I totally understand how depressed he must get. But there is a much more at stake than one person's life when we start to go down this road. Once we do say it is OK to allow mercy killing then the slippery slope will lead to a world that snuffs out anyone who is serious ill or disabled.

Neither my wife, who was seriously burnt at the age of 6 months, or I, who had cancer at birth would still be here. In fact my wife's father, who has epilepsy would have been put down after his first fit when he was a young boy, so she would even have existed. Or would her two sisters, or their sons. So already, that's seven people taken out of existance. OK that's a bit dramatic, but this is the result when you start making decisions around life and death on something as intangible as quality of life. What is a good quality? How do you decide? Will it come down to a list of conditions that we as a society see as just being too much to bear? But who says what is a terrible illness or disability?

Once we have eradicated everyone with these serious conditions, surely won't people with lesser problems, things like dyslexia, poor vision, weight problems and maybe even the elderly, start being considered to live lives with no quality? Once you start, the goal posts will keep changing as society starts to see any condition as being unbearable. Another outcome would be the gradual change in medicine. No longer would doctors and surgeons strive to cure disease. Instead they would just kill their patients, as an act of mercy. Slowly all research would cease and eventually all illness would be seen as something that merits death.

But whatever your beliefs on this issue, the way it is reported on TV is disgusting. No balance, no examination of the subject. Instead we see an editorialised piece filled with words and phrases like "tragic", "suffering", "die with dignity" and "right to choose". Tonight's item on Tony Nicklingson was given the leader line "Trapped inside his own body". Well aren't we all trapped inside our own bodies. That describes being human, surely? There was no exploration of his condition, and if there are ways of allowing him to live with his disability independently and with dignity. Let's not forget that Mr Nicklingson has a similar level of disability as Stephen Hawking, a man who has changed the way we see our world and who has written loads of books while being "trapped inside his own body".

Instead of focusing on how this man wants to die, which is common when people are at the early stages of a new disability, the news should really have explored why this man has not been given the services and support that he and his family obviously need. It also should have looked deeper into the history of mercy killing, the truth behind what it means and why some people believe it is something we should avoid at all costs. At the least it should have been a measured piece and not shock news that played on people's fears of illness and disability.

Sunday, 18 July 2010

The "Social Model" strikes back!

Now I didn't really want to write a yet another blog that is heavy on the disability issues agenda, but recently I've had a bit of access bother that really grinds my gears! I live in Camden Town and as everyone knows it is a shopping Mecca for those of us who like life on the alternative side. I first came to Camden from my home town of Luton back in 1983, and soon became a regular at the Camden Palace. and the Electric Ballroom There were always issues about enjoying Camden in a wheelchair. Whether it was crawling down stairs to get to the dance floor at the Palace, or fighting to go to the toilet in the Ballroom, it was always kind of do-able. But however hard it was to experience Camden in the 80's, there were two things that made it bearable. One was that the rest of London was equally as bad, and the other was that things would obviously have to get better in the future.
So let's leap forward in time 27 years, to today. While other areas of London, such as Islington, Covent Garden, The South Bank, Spitalfields, Kensington and pretty much the entire East End, have made steps towards building access into the environment, Camden seems to be going backwards. If I was to list the problems individually this blog would be a mile long, so instead let's look at this in a more general fashion.
Where should I start? Well to get around a place you have to use the pavements. Paving in London is in a shocking condition, even in some of the areas listed above. Here in Camden the council have just re-paved Camden High Street, from outside the tube station (let's not get started on accessible transport just now) right up to where it meets Chalk Farm Road, and there are plans to re-pave that part of Camden too. So wheeling on new paving should be like wheeling on glass (not broken of course). No chance! Large areas of the paving is concrete with slab pattern etched into it, which makes the surface bumpy. Even though it has only just been laid, it has already been dug up by a power company and they filled the holes with tarmac, that has sunk to cause great big holes that you hit in a wheelchair on pain of death. There are trees planted at regular intervals with huge areas of earth around them. These will turn into quagmires when it rains and will be equally dangerous to anyone with mobility issues. Then there are areas for delivery vans to park on that are paved with cobbles. COBBLES!
Cobbles in themselves have there own place in hell, and are the bane of anyone living in or visiting Camden in a wheelchair, pushing a pram or even wearing high heels. They are everywhere, and are even being promoted as a paving material by the council's planning department. The Henson Building, a new housing development in my street, has been paved right up to the front door with cobbles, and not even well laid cobbles at that. So you've had it if you want to buy or rent a flat there and you are in a wheelchair. Huge areas of Camden have been paved in cobbles. Almost all the Stables Market, and the Dingwalls Market are cobbled as well as bits through out the borough. Now I'm currently advising the Stables Market's owners on how to improve their access, but they informed me that they were told to lay cobbles during their re-development of the site by the council. Even if every cobble in Camden was lifted and re-laid and re-pointed so they are a level surface, they are just not suitable for high traffic areas. As the cobbles stand at the minute, with their uneven surface and massive gaps between them, there are places in Camden that are dangerous for Olympic athletes to get round, let alone those of us with mobility issues.
Lastly, so many of the shops, bars and restaurants in Camden have steps up to get into them. Not only that but some places have had their access made worse during recent re-furbishments. One bar on the High Street has had it's disabled toilet turned into a cupboard, and a restaurant near my flat has had it's level entrance replaced with steps. Has the council pointed out that this not only breaks the Disability Discrimination Act but also building regulations? Have these venues had their licenses revoked for barring disabled people? Of course not. This week I visited a cafe/bar that used to have a fantastic wooden ramp outside that was so good I used as an example of good practice to other businesses in the area, only to find the ramp had gone. When my wife asked the staff in the shop, she was told they had removed it after the council had told them they couldn't leave it on the pavement, as it blocked foot traffic. To put it back the shop needed to apply for planning permission, even though it was a temporary ramp that was laid out when they opened and removed at closing time. If that is the case, why have so many places in the area got folding signs, with menus and "2 for 1" drinks offers advertised on them, outside on the pavement? They cause people to have to avoid them just as a ramp would. But then most places in Camden don't even have a portable ramp that can be put out when needed, which is now required by law. Time and time again I get the "Huh?" response when I ask how I get into a shop or cafe.
I thought that council's all understood the social model of disability, and how it is our environment creates our disabilities. So why is it that Camden council seems hell bent on making Camden less inclusive? Let's face it, in less than two years time there is going to be a massive influx of disabled people into London, thanks to the 2012 Paralympics. Does the council want them to visit Camden and feel excluded due to the terrible access? Do they want disabled people from Third World countries to come here and think "Hey it's a bit like the pavements back home"? Whatever the council think, it's time that we disabled people say no more. So come on everyone, let's stand up to this injustice and tell them we're not going to take it sitting down any more! (wheelchair joke to end on!).

Thursday, 15 July 2010

"Scapegoat - Part 2"

Further to my last blog, I recently attended an event where I met a fellow disabled person who was the card to hold when playing disability Top Trumps. Not only was he a wheelchair user who had a weakened right arm, but he also was loosing his sight due to Macular Degeneration, and his hearing too, and he was also Dyslexic and Dyspraxic. So he was Physically & Mobility Impaired, Hearing Impaired, Sight Impaired and had a Learning Disability... and he had just had his Disability Living Allowance stopped, and he didn't even get the full amount in the first place!. Now if this guy is considered to not be disabled enough to fulfil the criteria for DLA then who the hell is?

It's plain that there is a plan behind this new policy on disability benefits. Many years ago I worked as a Fresh Claims Clerk in Luton dole office. There was a kind of unwritten policy there that every now and again a group of claims would be stopped and then we would see who could spare the time to come in a spend all day sorting out their benefits. Yeah it did weed out some fraud, but it caused a great deal of upset for the majority of legal claimants. This policy looks like is being applied to disability benefits. Surely only those who are in real need will battle to ensure they keep their benefits? But what about those people who are too disabled or sick to be able to spend time on the phone, attending offices and filling in forms? Or what about those who have a disability that means they can't understand what is happening?

The thing that makes me most angry about this new Tory policy is while they are hammering the disabled they don't seem to care if their members act like Barnet council has recently. Brian Coleman and his fellow Conservative councillors on Barnet council have awarded themselves huge increases in the allowances, some of nearly 40%. Now whatever your views on this bonanza pay day, I feel that the fact that this they are members of the same party that is telling us we all have to tighten our belts and prepare for job losses and massive cuts in services does have an element of hypocrisy. If a disabled person get the highest rate of Incapacity Benefit and DLA their annual income is around £11000, but Mr Coleman is now earning an annual wage of £113,735 (plus the pay from any private sector jobs he holds of course). Both is from the public purse, yet who is more deserving? Let's not mention the massive pay packets and bonuses of company bosses and bankers. So this government really is attacking the poorest while ignoring those who could easily afford to put more into the public purse.

But what really upsets me is this attitude that if a disabled person is not working or fighting to find work they are a useless drain on society when society isn't exactly an equal playing field. I recently spent a day with a fantastic group of young disabled people at a charity called HertsPASS. They help disabled people get ready to try to go into the work place, and are staffed almost entirely by disabled people. It was a real eye opener to see how much these young people wanted to work, and an inspiration too. Especially as they knew the barriers they would be facing as they as they tried to become independent and employed. One of the guys there worked as an advisor to companies on issues of access, yet he had been waiting for 6 years to find a flat where he could live with his PA. So since he left college he had been forced to live with his parents. He had finally found somewhere and was going to be moving in soon. We also discussed how few clubs and bars and other places a young man who had just left home might want to visit were accessible to him where he was going to live. So even though he had managed to find work, and was now doing what the government says all disabled people should do, he still didn't have access to the same experience of living able bodied people have. Surely the way to get disabled people into work is to move towards making all of society accessible. If the policy was to create fully integrated education, make the built environment out there fully accessible and change in attitudes towards disability and difference then everyone would be playing on a equal playing field, and would get the same chance to work and the same rewards from it.

This week it was brought home to me when I attended an event at Shape in Kentish Town that examined the portrayal of disabled people in the past. We looked at paintings and engravings of disabled people from the 18th & 19th centuries and discussed what the portrayal might mean. Most of the people who looked at made a living as side show exhibit. Some made a good living showing their amazing abilities despite their disabilities to Royalty and Nobility while others appeared in Freak Show style events. Some where event the property of the people who ran the event. Yet if we examine how they lived they could almost fall into the hoped for future of disabled people that this government is championing. They all worked, and paid their way. So what if hey had no dignity and had to live off the attitude towards their disability? So what if they had no security? Could it be that this government is forgetting the Tories old love of Victorian Values and going for Dickensian Values instead?

Whatever, I worry that if these changes are being put in place by our government after such a short time in office will we end up with a situation that means we look back on the past, and the discrimination we faced, as a golden Utopia?

Monday, 5 July 2010

We're for the Chop... or "My Life as a Scapegoat"

If I'm honest the subject of this blog has me shaking with a mixture of anger and sadness that is making it a little hard to know what to type into my keyboard. However, I feel it is so important that I challenge the hypocrisy of the current scapegoating of disabled people that I have to write something. I just apologise if it is a little ranty and rambling. Whatever, here goes...

The last government started the process of changing the mind set of the British public towards disabled people. We went from being valid members of society, who were given certain benefits to offset the way we were disabled by both our medical conditions and the way our environment does not cater for our needs, to work shy scroungers who were defrauding the state of huge sums of money when we should have been out there working no matter how difficult that might be for us, like all the salt of the earth able bodied voters. That or being whisked off to a clinic to be assisted in suicide. The saddest thing was that this change in the way we were talked about worked too. People in the street stopped seeing disabled people as people they should have compassion for and we became some kind of useless waste of space.

Blue Badges are a perfect example. Once they were seen as something given to people who had a medical need for them and were a kind of benefit that was deserved. Now they are seen as an unfair freebie that have become the target of thieves. There is even a website for people wanting to buy stolen Blue Badges, that gives advice on how to gain one illegally.

The new Con-Dem government has really taken the gloves off on disabled people. It seems those of us with disabilities are to be the target for many of the deficit busting savings our new chancellor outlined in the recent budget. Not only is Incapacity Benefit, or Employment Support Allowance as it is to become, in their sights even though we live in a society where the workplace is not accessible to many disabled people so working is out of the reach for many of us, but also Disability Living Allowance is also now under the knife.

Lets just examine those benefits shall we? Incapacity Benefit was where all people with any medical problem was placed under the Thatcherite Tory government to massage the unemployment figures during the last recession. Many disabled people were told that they were "unemployable" due to their disabilities and so this was the benefit for them. Huge numbers of disabled people began a life on benefits. Invalidity Benefit, as it was then called, was slightly more than Unemployment Benefit, mainly due to it being a dumping ground payment, but still wasn't an amount that meant those claiming it were on easy street.

Disability Living Allowance came into being when Attendance Allowance and Mobility Allowance were combined. These were payments towards the extra costs incurred by disabled and sick people when living day to day. Mobility Allowance, or the mobility component of DLA, is there to pay towards travel costs, and as we still live in a society where our public transport is barely accessible to many disabled people, cabs and specially adapted cars are still the only means of getting around open to many. Many people like me who get the Mobility component, give the entire amount towards paying for our Motability car. (no we do NOT get a free car!) As Motability is one of the largest buyers of cars in this country, cutting this benefit will impact on our struggling car industry. Attendance Allowance, or the care component of DLA, covers other costs. Anything from paying to have someone to accompany a disabled person when going out, to paying for things like gloves that I use when wheeling about are meant to be covered by this benefit. Neither benefit is enough to make any recipient rich, and due to the way entitlement is assessed they are not open to fraud.

But it is not benefits being targeted that most annoy me. It is the fact that disabled people still do not have real equal rights legislation. The Disability Discrimination Act is a toothless piece of law that anyone can get round, as long as they can prove that to bar disabled people from the same treatment as the rest of society is "reasonable". This wonderful word, included in our equality law only, means that you can pretty much do as you like when it comes to disabled people, as we are the only group who faces discrimination due to the environment. The changes we need for equality are structural changes to the world we live in, they cost money and so during this time of recession is it reasonable to ask struggling businesses to implement a program of expensive works to their premises? Most would claim not, and they would win in court. The other reason why the DDA is a useless law is that all other minority groups, when they face discrimination it is an act against the crown. For disabled people, discrimination is an act against the person and so we have to take out private prosecutions using our own money. This why so few cases have gone to court, and another reason why the changes we need to make the UK a more equal place have been so slow in happening.

Even if the British Isles was a wonderful world of accessibility, the last problem with focusing on the benefits disabled people are entitled to is the recession itself. As the numbers of unemployed are going up, in a repeat of the era of Thatcher, who exactly is going to be rushing to employ all these terrible scrounging cripples? I can't see many employers rushing to take on someone who not only has no work experience as they been on benefit for years due to a disability, but who also needs them to possibly change their building's access and change their work practises? Don't forget that someone with a disability will need to have the fire escape procedures changed to ensure the business complies with Health and Safety and fire regulations. And that's just one little problem. In a time where millions of able bodied people are searching for work, the idea that disabled people are going find joining the work place any easier than they did in the past is a joke.

So now we are rushing towards a new dawn for disabled people, where we are to all be reassessed for all our benefits, whatever the cost of that procedure is to the tax payer, and some will be expected to battle to get a job in a hostile work environment and thus end up on a different and lower form of benefit, and the rest will be scarred by the fear that this scapegoating of disabled people causes. For all of us, it spells the end of the feelings of pity and sadness that we once caused in the general public, and that we hated, to have them replaced by much worse feelings, deep resentment and mistrust. Personally I think this government should hang their heads in shame. If they were going to give us real equal rights laws then maybe, just maybe these changes could be justified. As it stands they are picking on the members of society that have the least ability to fight and protest. It smacks a little of the early policies of Nazi Germany, and we all know where that led.