Huffington Frenzy

Recently I’ve had a few comment pieces published on the Huffington Post website.

Most recent is one about an experience going for an MRI scan at a private health clinic through my GP. Called “Is The A Taste Of Tomorrow’s NHS? it describes my nightmarish trip to be scanned in all it’s glory.

Before that I wrote about some people’s obsession with the idea that faith can cure disabled and sick people in “Faith? Please Cure Us Of This Myth“. It might seem that there is truth in the idea but I ask is that right or even helpful?

To start the whole frenzy off I had my ode to love, luck and my wonderful wife Diane “Oh, Lucky Man” published. So glad they accepted it as it was our 8th wedding anniversary that week. Di loved it, I hope you do too.

On top of that I had my travel article on our recent trip to Barcelona published on Disability Now Online, “La Merce: a weekend in Barcelona” and if you want to read back issues of PosAbility magazine with my column in you can do it online now.

All this of this writing was drafted using a pen and paper. Old fashioned I know but I am currently studying a Creative Writing course at the OU and they advise students to do it this way. It really helps too. You can get those ideas out without fighting with a keyboard or other bits of tech. I really am a Luddite Mik eh?

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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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New Articles in the Huffington Post

I’ve just had two new articles published on the Huffington Post.

The first piece, Cross About Crossrail, is about a protest I went on about the Crossrail project here in London, highlighting the problem that not all of the stations along the route of the new line will be fully step free.

Then in a complete change of pace I have a review of the new V&A exhibition Club to Catwalk called Club to Catwalk – 80s Fashion, Just Not as I Remember It in which I reminisce about the old days of dressing to impress in the 80’s.

Hope you like them, even thought they are very different!

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Another Huffington Post Column

I’ve just had another column go live on the Huffington Post. This one explores the issue of cohesion within the disabled community, and my fears that we may be at the start of a move towards a splintering of our merry disabled band. It stems from my attendance of the Disability employment Conference that was held in Mid July. But I will say no more… read the piece. And maybe comment too?

The Panic sets in at the Disability Employment Conference.

The panic sets in at the Disability Employment Conference.

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Previous Columns in PosAbility Magazine.

Here are a all of my columns published in PosAbility Magazine up until the most recent issues.

Love’s Great Adventure Published December 2011

Tomorrow Is Getting Closer Published February 2012

Adventures In The Sun Published April 2012

What Doesn’t Kill you Makes You Stronger Published June 2012

Body Beautiful Published August 2012

What Are Words Worth? Published October 2012

Scarlet’s Christmas Carol Published December 2012

To See Yourself As Others See You Published February 2013

Equality; You Can’t Pick and Choose Published April 2013

Keep checking back as I will be adding new pieces on a regular basis.

 

As well as my column I am now writing articles for PosAbility. Here is the first one.

Home Or Away? Published April 2013

They are all PDF files, so just click on them and they will open in a separate window.

 

Click here to Subscribe to PosAbility Magazine

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Technofeary – Why Tomorrow’s World lied to me

In the last year or so my career has taken off again like a rocket. This is in no small part in thanks to my wonder wife Diane. It was her advice that led me to focus on creating an online presence, one which I am still working on. In fact this week, after a very long time avoiding what I saw as a potential time eater, I joined Twitter . So I am now as near to fully 21st Century as I can possibly be, or am prepared to be, and must admit I am having very mixed feelings about the whole process.

 

As I said my career has taken off again, after many years in the doldrums. I truly had no idea how much researchers now relied on the Internet to do their job in today’s media. When I did my BBC training in research for the media we all had to trawl through papers and publications, visit libraries and read books and contact experts in our or the channels contact lists, as well as use the fledging world wide web. But those days have long gone. With so much being available with the click of a mouse why would anyone waste time with any other method of research? Especially in a high pressure industry like the media. Diane kept saying to me “If you don’t exist online, you don’t exist”. I didn’t believe this, even though I should have learned by now that my wife is always right, until the BBC transmitted Are You Having A Laugh , a programme that explored the history of disability on TV in 2010. As someone played a pivotal role in the industry during the late 80’s and early 90’s, and who has a long list of “firsts” under his belt – including first disabled actor in a UK soap, first disabled presenter on mainstream kids TV, first disabled presenter on Channel 4, first disabled live continuity presenter… the list goes on but I don’t want to brag too much (yeah right) – I was most upset to see I had been left out of the show. As I always believe in not getting mad but getting even, this was what lit a fire under me and got me wanting to get back into the industry. Until this show I had decided that my time had passed and that I should wheel aside to allow newer talent to pass, knowing that my past work would always stand to show I was there. But as I had now been written out of history I had to come back, if only to prove I existed back then. (Yes this does give an insight into my psychology in a big way, but hey I know myself and have faced up to what it says about me) My wife explained that if I didn’t exist online how would anyone know about me? So together we plotted to change this, and planned for my come back….

 

Move forward three years and I am back. Maybe not to the level I was during the early to mid 90’s but it is harder to come back than to get there the first time I can tell you. For one thing I’m definitely no longer new talent, which is an industry obsession. But I digress. This blog is about the ever spreading new technology and the applications that it uses… and my problems with using it all! Now they mainly revolve around the fact that they are making me feel old. I remember when we got our first video recorder, which was VHS and not a Betamax… unlike us to get the right one first time. While my parents had made the correct choice more by luck than judgement, that was as far as their techno-knowledge went. They never got the timer to work, and regularly videoed the wrong program, either on the wrong side or at the wrong time. So many of my TV appearances were recorded over with Coronation Street or bad late night films too, and as a fan of all thing techie I laughed at their apparent fear of these new gadgets. As I grew into adulthood my love of technology continued. A had a studio full of electronic gizmos and keyboards covered in knobs, and ever advance in music and video players I just had to have. CDs, DVDs, Mini-Discs, DATs, and of course MP3s. I replaced my music and videos with each new advance. But then in the last few years I slowly found myself saying things I heard my parents say when fighting with the video recorder all those years ago. “Why isn’t it working?”, “What do I do again?”, and of course “Damn stupid thing” (or much, much stronger) all fell from my lips, while I fought to grasp what I was doing with some new bit of kit.

 

It started with my first smart phone. I had been super fine with computers. I even built them, for FUN. I now have a flat full of out of date PC’s (and piles of circuit boards and components) all of which are less powerful than my current mobile. I also have loads of software but all really old versions that are basically expensive coasters now. I suppose as I spent a while out of the game while I was ill back in the early 2000’s, meant I fell behind with technology, but in truth I feel it is something to do with the fact that more than ever before every single one of my bits of technology does so much stuff. Back in the olden days, when everything was olden times like, gadgets all tended to do one thing, and if you paid a bit more they did that thing very well. Now all of our gadgets play music, surf the web, get e-mails, are phones and texting devices, plus are cameras and video cameras and hold all of our information and all to high level of functionality. My new PC is a mammoth great beast with 16Gb of ram (my first had a measly 256mg!) and it can do everything super quick, but then so can my Dell Windows phone. But they have to be this amazing as there is so much more for them to do. My new PC is capable of editing video to the same level of a machine that would cost hundreds of thousands of pounds back in my TV days, and as for music I now have a studio that I could only have dreamed off in the 80’s all for really cheap. But all of this is also running on the same PC I do e-mails, run my diary and write this very blog on which can lead to moments where I resemble my Mum and Dad hunched over the VHS. But also let’s not forget that as well as all the things technology can do, we are all connected thanks to the social network.

 

I am totally new to the concept of social networking. I avoided the whole thing for two reasons. The first was that I already felt that I spent too much time hunched over my keypad typing or peering at the phone with my aging eyes straining to see what was on the 4 inch touch sensitive screen. Now I am on Facebook, Twitter, LinkedIn, YouTube and have my own blog based website which you are currently now on dear reader, and they all eat into your day in a way that no other invention of the last 100 hundred years could. The second is a mixture of not wanting to put too much personal information out there about and a fear of my inability to filter what I say sometimes. With my conspiracy theorist brain, now feeling I was right after the new broke that GCHQ has been spying on all of our electronic communication, filled with paranoia about who is watching what I might write, and my skill of saying the wrong thing at the wrong time I am still unsure if I made the right decision to go for it and network myself up. So far I haven’t put anything online that would interest the powers that be, other than my comments on their policies concerning disabled people, or have I ranted about someone or something in a way I can’t take back. We’ll just have to wait and see eh?

 

I will say I am finding myself becoming addicted to checking my Twitter and FB on my phone, and am enjoying a little too much watching the number of followers I have creep up. Yet again I know that this feeds the part of me that made me want to famous in the first place. I am also loving interacting with like minded people out there and sharing thoughts and concerns with them. I am sure it will lead to a whole new form of disability movement that will be unstoppable this time. But I still worry about all the things I am not doing while I am tied to some form of technology. I have lost count of the number of sunny days I have watched through a window while I type away on my PC. Sure that what working is, but I am a freelancer with at least three laptops so why aren’t I in the park sunbathing while I write? Because I might need fast Internet or access to my networked NAS hard drive storage devices or wirelessly print something or some other vitally important techno function. Because the one thing all this technology has done has made every single thing we do super urgent. No time for it to be done tomorrow, we are contactable 24/7 so we are working 24/7. Even if we work for ourselves!

 

Maybe that is what I like the least. The lack of time to stop and smell the roses. When I was a kid I thought of a future filled with time saving gadgets and dreamed of a world filled with robots, space ships and lazer beams. Now I’m in the future and all we have is piles of stuff that eat into our time and have come up with new ways of spending time, with none of the cool stuff from my childhood imagination. So not only have I been robbed of the “world of tomorrow” I dreamed of, but what stuff we do have isn’t exactly freeing us up to have more fun. But I wonder if it is really that we are at a cross roads. I have a collection of classic analogue synthesizers, some older than I am, and they became considered old fashioned during the late 1980s, early 1990s with the roll out of tech like the DX7. So away went all things with knobs on and in came slick boxes. But now knobs and old school looking tech is all back in. I wonder if that is what will happen with the other stuff around us. We will reclaim what they were originally meant to do, and not be suckered into how new they are right now. The key point of any piece of technology is to save us time, and the sooner we remember that the better. Hopefully they will have more knobs on too, and be a little easier to get to grips with at the same time, but that is just my aging brain asking for some assistance with the ever increasing number of programs I am having to learn. A few well marked knobs or at least GUI buttons and I would be away. And less time spent fighting with technology or being tied to it for very little reward would allow us to do more living. That’s what the future should be. Living with technology that works for us while we live, interacting with it as a tool to make life better and not feeling chained to it, unable to escape work and deadlines while we scream out loud at inanimate objects as we try to make them work.

 

Anyway, enough rambling ranting about technology. I’ve been away from Twitter too long writing this and might have something important. The I’ll have to announce this blog on Facebook and Tweet about it too. There is no escape…

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Sex: Are We Really So Different?

I read the article “Sex: some facts of life” by Kirsty Liddiard in the April issue of Disability Now with great interest. I once trained to go into social work, with the aim of working with newly disabled people. I also recently decided to change my studies from a Psychology degree (to one in English and Creative Writing) after finding that the medical model is still being taught as the only way of describing disabled people’s identity. It was really encouraging to see someone examining the issue of disability and sexuality from an academic approach. With Kirsty being a trained sociologist and disabled herself, I hoped that the article would finally confront the issues disabled people face around sexuality and relationships in a rounded manner. However the piece actually seemed to blame any problems disabled people might have on disability itself and how society sees the disabled, without any broader conversation.
Now don’t get me wrong, I have an experience all of the issues covered in the article, from abusive relationships through poor body image to a lack of confidence over a change in the way my body functions sexually, and fully appreciate how each one can deeply effect someone’s identity and ability to form successful relationships. My own journey to the place I am at now, in a very successful and happy relationship with someone who loves me the way I love them, was a long and painful one. I also appreciate that the way I feel about my disability has had a serious impact on that journey, and is still key to my psyche and effects how I really feel about my own attractiveness. But I do not agree that these issues are something that disabled people face alone.
 
A key factor to being able to begin the task of looking for love is self confidence, and this is an area that effects everyone in our society. We only need to consider the huge growth in the number of people undergoing cosmetic surgery to understand that issues of confidence have an impact on members of society that we disabled people might see as examples of “physical perfection”, and that this is not what they see when they look in the mirror. Most sociologists and psychologists agree that low confidence around body image is a growing problem throughout our society, effecting both sexes. However much we might see our issues with body image as being more valid or obvious, the truth is the emotional and psychological impact of low self confidence is the same for anyone who suffers from it.
This lack of confidence can lead on to forming unhealthy relationships, which the article also covered. But yet again the stories of every one of the people interviewed could just as easily be those of non disabled people. I spent many years of my 20’s in a relationship with someone who abused me, both verbally and physically, and they went on to repeat this behaviour with their next partner, who has not disabled. I used to feel that it was my disability that caused this person to act the way they did, and this led me to stay in an unhappy relationship so long, but I now understand that is incorrect. While my lack of confidence was tied to my disability, it was the confidence issue itself that made me stay. The same goes for anyone stuck in an abusive relationship.
A deeper factor in disabled people’s lack of confidence can be due to a difference in the way our sexuality functions or our inability to have sex in a “normal” manner. While I was disabled from birth, my sexual function changed when my spine collapsed at the age of 15. This led me to spend most of my adult life wrecked with self doubt about my ability to satisfy my partners sexually and to what would happen if anyone found out about what did and didn’t work in the trouser department. So I spent years lying to everyone I knew and praying any ex’s would keep my secret. When I met my wife, being with her gave me the confidence to “come out” about the way my body worked. When I did so in the most public manner possible (i.e. on TV) I found that nearly everyone of my male friends sidled up to me at some point and admitted that they to suffered from serious sexual dysfunction issues. The fact that Viagra is now taken as a recreational drug demonstrates how big this problem is for all of male society. I do not feel informed enough to discuss the issues faced by those people who might need assistance when having sex, but can see how that might effect not only how you feel about yourself but how you approach sex entirely. I do know that it is normally these people who are expected to use prostitutes if they ever want to have sex.
Thankfully the article did finally dispel the idea that sex with a prostitute is a solution for disabled people, especially men, who are seeking sexual experience. There are many people who campaign for legalising prostitution who use disabled people as an excuse for their argument, yet it should be obvious that it will be an empty experience whether you are disabled or not. For anyone lacking self confidence, visiting a prostitute can only reinforce these issues. No one will feel better about themselves if they feel the only way they can experience love or sex is to pay for it. But there is more than one way of paying for it. I once was in a relationship with someone who expected me to pay their rent, buy their clothes and cover all costs when we went out and seemed to think that was fine as they gave me sex. It made me feel cheap and made me mistrust prospective partners too. If I hadn’t met my wife I don’t know what kind of barsteward I might have become. I also know from those non disabled friends who have visited a lady of the night that they have exactly the same experience of emptiness afterwards.
We now come to the issue of fetishism. I spent most of the 90’s partying on the fetish scene and will admit I found the acceptance and tolerance I was met with really liberating. I even spent a short time going out with someone who admitted they “dug the wheelchair”, if you get what I mean. I left the whole world because as it became more accepted by the wider society, the ignorance of the wider society bled into the attitude this underground scene. Once people understood that a disabled person wouldn’t be in a fetish club if they couldn’t have sex, what ever type of sex that might be, but I eventually found myself explaining on a nightly basis that my wife and I could have sexual relationship (on a nightly basis if we wanted).
Just because I spent time in the world of fetishists, that doesn’t mean I have no understanding of why so many disabled people find the whole thing offensive. No one likes the stereotype that the only people who might want to have sex with them could be called perverts. Back when I was part of the London fetish scene I filmed an item for Channel 4’s “Freak Show” series that I hoped would explore the subject of disability and fetishism in a serious yet light hearted way. Instead it was edited to imply that my wife was only with me because I was disabled, so I know how hurtful this idea can be. It especially upset my wife, as she had actually said that she loved all of me and my disability was part of what made me, me. Never trust a TV producer and their editor. The crazy thing is I admit that I chatted up my now wife partly as I saw she had a scar all down her right arm. I think scars are really beautiful and the way she paraded it so openly said something great about what kind of person she was. But does that make me a devotee of her and her scar, or is it just another facet of how perfect she really is?
All of this is OK and it is only my own opinion, but does it help us find a solution to love, sex and relationships? Well I hope it does. If we as disabled people realise that all of the issues we face around the subject are the same as those faced by everyone, whatever the cause, then we should hopefully feel able to enter the world of love on a more level playing field. Yes we do have our own issues to face, but the way they effect us emotionally is not so different to the way the rest of society’s issues effect them. All I know for sure is many of my non disabled friends are desperately looking for the same thing we are all chasing, a happy and loving relationship and they wouldn’t care if that was with someone who disabled or not. At the root of this whole subject is the fact that self doubt is part of the human condition and how we cope with it makes us who we are. So let’s stop seeing disability as a barrier to love, and instead embrace it as part of what will make us a real catch.
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