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.

Facebooktwittergoogle_plusredditpinterestlinkedinmail rssyoutube

Latest Huffington Post Column

I have just had another column go live at the Huffington Post. It’s called Not Going To Take It Sitting Down, which as well as being a line from one of my old songs is a play on words about the current situation faced by disabled people in the UK today. I wanted to focus on how us disabled people are not only one of the main focuses of current government cuts but we are also at the fore front of the protests against them, but using new and cutting edge methods.

I will say no more, so please take a look, and if you agree with the sentiments of the piece please visit the campaigning sites featured and give us your support.

Facebooktwittergoogle_plusredditpinterestlinkedinmail rssyoutube

Right to Die? Right to Live is better!

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.

Facebooktwittergoogle_plusredditpinterestlinkedinmail rssyoutube