Welcome to the World of Tomorrow – one of your making?

Mik & Stairs

Fly my Beauty… or go round the back.

Recently I have written several articles for the online publication The Huffington Post and the disability magazine PosAbility exploring many current issues of great importance to disabled people like me. Much of the press has also covered the very same issues, gaining views from from all sides of the political debate. In the last week disabled people came from all over the country to make their voices heard as an attempt to get a wider public and the government to listen to their fears over how many of the changes in benefits and social care underway at the minute may impact on their lives, and some of the press has carried pieces explaining these worries too. Whenever one of these pieces are placed online they find themselves accompanied by a large number of comments, and as I sat reading a selection of these last night I felt driven to write this article. I am hoping not to give you any answers but to pose a thought experiment based on my own personal experience of becoming a wheelchair user at the age of 15. I will not refer to my age during the piece, but I will change some elements of the story as to ensure you can imagine it applying to you.

Are you sitting comfortably? Good, then I’ll begin…

Imagine, one morning you awake ready for the day and as you go to get out of bed you find that instead of taking your weight your legs fold underneath you. Try as hard as you might, you just can’t seem to keep yourself upright, but you have a very important event happening that day and so you order a cab to take you to where you have to be. On arrival you collapse in the door of the taxi, a crowd gathers around you and an ambulance is called, where upon you are rushed to hospital. After a week of tests, where no one is prepared to say exactly what is wrong, you are moved to a major London hospital for further examination. You are soon told that sadly it appears to be cancer, which is made even more worrying as you have also discovered you are in a terminal ward. Fortunately the next day you are informed that your prognosis was incorrect and instead of a serious spinal tumour you are in fact suffering from a major spinal collapse. So while you are not dying you are facing some major surgery.

Your first operation takes 13 hours and leaves you unable to move or sit up. You are in that state for two weeks, before you are moved to yet another hospital for reconstructive spinal surgery. During this time almost everyone else in the ward dies, some dying in ways that would not be out of place in a gory horror film. After you arrive at the new hospital no time is wasted and you are soon in surgery for a 12 hour operation. You stay in this hospital for several months, during which time you fight two serious infections, one case of post operative double Pneumonia and one allergy to the material used to close your wound. But you pull through and six months after the day you collapsed you find yourself back home. While you are overjoyed at getting home, it is not completely the joyous event you might have hoped. For now all the people in your life have changed in their relationship to you. Once you saw them as equal, but now they are your carers. You find your have lost your job, and in fact are still too ill to even consider working. The future that you had planned and worked for now seems to have turned to dust. You find yourself lost and falling into a dark place, unsure of what tomorrow holds for you.

This is where my thought experimental starts. What kind of society would you want to live in if you found yourself in this position of being newly disabled?

Let’s imagine World A, where even before you leave hospital a team of experts begin working with you to create a care package that puts your needs and wants at it’s center. This means that your family and loved ones are as involved in your care as you, and they, want to be and you know that independence will be at the center of your life from now on, almost as much as it was before your impairment struck. Your home is adapted, with financial assistance provided if you need it, and if your home cannot be made accessible to you a specially designed wheelchair accessible home can be found, either to buy or to rent. You are also assisted to claim all the relevant benefits that you and your family are entitled to, which ensures you do not have to worry about your finances even thought you may see a dip in your income. Your applications for financial assistance are supported by the medical professionals who have first hand knowledge of your full medical history and your prognosis, which as well as ensuring your assessment is correct prevents fraudulent claims. In fact on your arrival home you find that you are not worried about anything other than getting better and learning how to live with your new abilities. You find that you have several well publicized role models of successful disabled people to inspire you, successful in many areas of life from sport and the arts to business and politics. When you leave the house you are met on occasion with sympathy and even pity but mostly you find you are treated as an equal. You live under a legal system that prosecutes any act of discrimination you and your family might face due to your disability as an act against the state, which means the police will be involved and you do not carry the burden of the expense of any case. While you are only at the start of what may prove to be a long road to recovery, you are secure in the knowledge that you will be in control of where that road takes you.

Now, let’s picture World B. Before you can go home you face a delay as it proves difficult to organize the adaptations to your home, due to the full schedules of the experts required to assess your home and your local council having spent their allotted annual funding for similar works. You are left in the position of having to either fund all the works yourself or to remain in hospital until your needs are met. If you do not have the funds to cover the required changes, when the council is able to help they are unable to fund a full refit of your home and can only carry out works that lead your home to be “suitable for your needs” but not fully adapted. This means that once you are home you may need extra assistance to do things like bathing, cooking and leaving/entering the building. You can try to move to a specially adapted home, but there is a lack of such homes. This is partly due to very few being built and partly as they are not always sold or allocated to disabled people like yourself, thus many of them have had all the adaptations removed. It is difficult to rent on the private market due to there being almost no accessible provision. So even if you want to leave, you may have to stay in your current home for some time. Your finances worry you because you are only able to claim for many of your benefits once you are home as you are required to attend assessments, where you are assessed by someone who has no knowledge of your medical situation or prognosis. While you are eventually successful in most of your claims, you still are unsure of the future as you require annual assessments for as long as your need financial assistance, in a drive to prevent fraud in the system. Your family are left to burden most of your day to day care, as you are only entitled to no more than two daily visits from a nurse or carer, who is charged with assisting you in the morning and evening, and this is driven by a lack of funding for social care. You are unsure of what time they will be visiting you but understand as they are very busy. It does however mean that you find it very difficult to plan your day, and this means you are also unable to see how you may even return to work in the foreseeable future. If you have your own means you can pay for increased care provision, but this is very expensive. Legally any act of discrimination you and your family face is seen as an act against the person, and so the only way of prosecuting any case is to take out a private prosecution, financed either with your own money or via a “no win, no fee” agreement with a solicitor. You find that there are very few disabled role models, other than a small number of top level sports people, and occasional faces in the media, but you do find these an inspiration even though you are not able to take part in sport yourself at present as your health will not allow it. When you do leave you home you find you are met with a mixture of attitudes. Alongside some of pity and sympathy, you also confront regular aggression, mainly from people who believe that you are either getting special treatment, due to the system of support that is there for you, or because they feel that you are consuming without contributing to society. You also find society now strongly believes that it is a noble course of action for people in your situation to commit suicide, for by doing so you avoid a life of suffering, save you family from a life of caring for you and save society the cost of assisting you to live. All of this weighs on your mind and you are left unsure of what your future holds. But you are hopeful.

Now before you complain that it’s a weighted situation, I should remind you that neither of these are true at present, yet both are true also. You can pick and mix from both for a real world experience of becoming newly disabled, but that is not what I am asking. I want to know which world you think we should be working towards, World A or World B, and more importantly; why? I will admit that World A will cost our society more to achieve than World B, but nowhere near as much as many of you might imagine. That is part of my question I suppose, how much are you prepared to fund either world and what are the reasons for your choice?

I hope that this article is a vehicle for sensible debate on the issues of rights, responsibilities and the needs of disabled people at this time of flux. So come on, put your thoughts in the comment boxes below and help build an understanding of why so many of you deeply feel the way you do, as demonstrated by your comments on so many other disability based stories. I look forward to reading them, and to starting a dialogue on the subject that may hopefully lead to some of us finding some common ground.

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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!).

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