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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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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Sill Ill

What a crazy month March has turned out to be. I had planned to write my second travelogue, about a recent weekend away in Penzance, but I will save that for later. Instead I wanted to write something about why March has not been a high point of 2012 for me so far. Last week I attended a conference for Disabled Workers up in Manchester, and gave a speech about my experiences in the media. I think it went over well, and it was great to meet so many committed and passionate disabled people, all keen to help each other ensure that the work place is a friendly and accessible place for all. While I was there I started feeling a bit unwell, and when I got back home this continued. By the start of this week I felt very, very unwell and went off to visit my GP.

It transpires I have a serious infection. Now over the past few years I have been treated for a pressure sore, which it turns out was actually this infection in it’s early stages, so I think you can all guess where my infection is. Yes I have a gammy bum. Nice. I was given antibiotics and told to rest. By Wednesday this week I was feeling even worse and so I went off the the local A&E. The whole experience really showed how much the medical profession still see disability through the medical model. Obvious I suppose, but it does lead to some serious mistakes. I mean my GP has been treating me for a pressure sore for ages, as wheelchair users get pressure sores, and didn’t even think that it might be something totally unrelated to my disability that could be easily cured by some pills. At the A&E I found myself trying to explain to a series of doctors that I could feel parts of a lower regions, I had full use of my bladder and bowl and that my condition was a very rare. I am one a very small group of people to have survived the cancer I had as a baby, and the treatment I had led to side effects that effected even fewer people. Like just me. So all of their experience of wheelchair users, and paraplegia is useless when dealing with me. Of course try to make doctors understand this is next to impossible. How can a patient know more about medicine than they do?

But before I go off down the road of another rant about doctors and disability, I must stop myself. For this is not what I wanted this blog to be about. Instead I wanted to talk about the way I am feeling while I lay in bed, pumped full of super strong antibiotics watching day time TV. All this feeling ill, being unable to do anything while all your plans unravel took me back to how I felt as a teenager when my back collapsed. I spent nine months in hospital, three of them in a terminal ward (as the doctors were sure my cancer had returned and I would soon be checking out – I hope this goes some way to explaining my deep mistrust of the medical profession, but I assure there are many more mistakes and misdiagnoses to go towards that explanation). While in this ward of death almost everyone of my fellow ward mates died, some in very unpleasant circumstances. Not the kind of thing a teenage boy normally has to deal with, especially as I was sure I would be joining them in the morgue fairly soon. While I laid there waiting to meet the grim reaper, I listed all the things I would never do. Dye my hair, go to a night club, and of course…. have sex. So when I was told not to worry, and I only had a knackered spine that would stop my walking and disco dancing for ever, I was very…. very relieved.

I then promised myself to live life as if every day was my last. And boy did I? I have had the kind of life that most non disabled people could only dream of, and I have built some superb memories to look back on next time I am expecting a visitor from Mr Reaper. But recently I have found myself worrying about stuff, and trying to create a secure future for me and my lovely wife. You know, grown up stuff that can suck the joy out of life in a major way. If you add that to all the worry that this crazy government and it’s even crazier policies on disability have brought to bare on most disabled people’s lives and I have really lost that joy for life. But as I lay in bed, either boiling hot or freezing cold as my body fights this damned infection, I find myself remembering the goal I had in my teens. Sod the Tories and their drive to force disabled people to either swim or sink, screaming, and the fact the place where I live seems to get a little less accessible every time I go out. However much the world seems to view disabled people as a drain on societies coffers, who unreasonably demand equal access to the world around us even if it means altering historic buildings (sorry but I am currently in a battle with a Camden preservation body about ensuring wheelchair access to the local canal and “heritage features” have become dirty words in my house), life is too short for all this arse.

Instead I must seize the day, and enjoy my time on this planet. Of course that doesn’t mean I shouldn’t fight for a better world. Just make sure I enjoy the fight, and really enjoy the successes. I know that I have won some serious fights here in Camden over access and am now taking this experiences to the wider country. But I must remember to enjoy the process and the outcome. I must also remember not to let the bastards grind me down. If I get turned away from a building for being a fire hazard I must not let it ruin my day… or night. Instead I must just go elsewhere, have a great time… and then enjoy suing the people that turned me away. Whatever the issue or barrier, I must stop seeing them as a reason to get down. No they are a joyous thing, something to fight against and a fight to win. And if I don’t win, then sod them yet again. Not only will I not be going there again, but neither will my mates and family, and I’ll write a stinking article about them for this blog.

I think it is the one thing that can give us disabled people a clearer view on life. Once you’ve tasted how precious life is, the drive to enjoy becomes stronger. Yes it can also make the injustices we face cut deeper, but maybe it will drive us all shout louder against those injustices. All I know is that now I understand that once I am well again I plan to try to enjoy every minute of my life, whatever is thrown at me. So come on life, give it your best shot.

PS. My wife has just quipped that her pain in the arse now has a pain in the arse. That’s why I love her.

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Out of Touch?

I regularly run a session of disability awareness training for various companies, and am about to venture into training for media companies. I got the gig after I passed on some comments about language and disability to a TV production company. But before I begin advising them, I must admit I find myself filled with self doubt. You see I wonder if am out of touch with how disabled people feel about the way the world sees them now.

When I began my career in broadcasting, I lived a life where I was always the only disabled person in my social group. There was one other guy with a disability at my high school, but he was year or two younger than me so we didn’t really know each other. Other than that I was always not only the only but the first disabled pupil at all of my schools and colleges. I knew no other disabled people, and knew nothing of disability politics. This did get me in some trouble during the early part of my career. I got in deep doo-doo when I fronted the London area’s coverage of the ITV Telethon in 1992. I had no idea that disabled people were so against charity events like this, and truly thought that I was striking a blow for disabled people by showing that we could give to charity instead of always being the ones who received. This mistake really effected my career, and even today I get people calling me a “traitor” for being involved with Telethon.

This violent response, which included being spat at and physically attacked on occasion, led me on a quest to understand the politics of disability. I tried to get an insight into what was meant by disability politics, and asked my most ardent attackers all about it. I still remember a lift journey with Vicki Waddington that opened my eyes to why everyone was so upset with me. The time I spent working with the BBC’s Disability Programmes Unit was what really educated me about the subject, and allowed me to reassess how actions and words all have political implications when dealing with disability. Well that is actually true of most things, but when you are part of minority it is doubly true.

This was around the same time as the move away from the use of the medical model of disability towards the social one. Gaining an understanding of the differences between the two models made disability politics become clear to me, and I promised myself that from then on I would only be involved with projects that I felt were valid. I feel that I have always kept true to that promise. More than that, I began trying to help the able bodied people I met within the industry to see why there is more to ” doing disability” than just having us on screen.

Anyone who is disabled knows the feelings that comes from watching a program that includes disability, only to find that it also contains one of the stereotypes or clichés of disability too. There’s the “brave” cripple, the “super” cripple, the “tragic” cripple, the “angry” cripple or the “evil” cripple. We’ve seen them all, whether in factual output or dramas and soaps. For the able bodied people involved in making or watching the programs they just see good stories, with loads of all the ingredients that they feel make watch-able TV. But for anyone disabled, we see a continuation of all the attitudes and stereotypes that create the barriers to us being seen as equal. There have been moves to create guidelines for program makers. I was part of the team that created the BBC’s Producer’s Guidelines on Disability way back in the 90’s, but when I spent a period working there in 2008 I was shocked to find they were no longer used. So how can the people in the media be expected to know when they are getting it wrong?

Well this is where I thought I should do something. I found myself having to contact the teams behind any project that I thought had got it wrong. I soon learnt that no one wanted to make TV that portrayed disability negatively or even incorrectly, and it was always done through ignorance. But not always through the ignorance of able bodied people. Many shows had asked the advice and input of disabled people, some well known disabled celebs. But it seemed that they had been fine with the things I had found troublesome. I even found that on the Open University psychology degree that I enrolled in a few years back, that when the course covered the identity of disability it was taught from the medical model, which by the was well out of date. More shocking to me was the audio that came with the course had four well known disabled people discussing their disability and how it effected them medically, with almost no mention of what I thought was the globally accepted social model.

So before I begin advising media companies that they should start being aware that what they shoot, how they shot it and what they say about disability must all fit within a set of rules that strictly adheres to the social model of disability, I must ask you all dear reader, am I right to do so? Do you care if the media has stories of brave disabled soldiers climbing mountains, or TV shows about tragic disabled kids battling their condition, or dramas with angry, or depressed or evil disabled characters? On a purely selfish level, I know that by criticising the industry and what it does I may burn a few bridges, and I will freely admit I don’t want to put the final killing shot into my on screen career by trying to change the way the media portrays disability if most of you feel it isn’t that important. If you would rather just see disabled people on screen, no matter why they were there or what they were saying then I will stop my crusade. I am sure we would all like to see more disabled people in the media, but I think we know that this is coming soon, with the commitment to the 2012 Paralympics. I just wonder if we need to be fighting to make sure they get the chance to be doing and saying the right things too. If any of you have feelings about this topic please add our comments below. It might stop me committing career suicide, or spur me on to fight to make our screens represent the real experiences and desires of disabled viewers and educate the able bodied ones at the same time.

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Disability & TV – The Mik Scarlet Lecture – Part 2

In my last blog I hope I helped to explain why most disabled people find the use of the words brave and courageous in television output offensive, and why these words can have an effect the the mental health of anyone during the process of readjustment that occurs after coming to a disability or illness. In this blog I want to explore words like tragic and sad.

These two little words pop up all too often when the media cover anything to do with ill health. The main reason is that finding yourself disabled or being diagnosed with an serious illness is pretty tragic, both to anyone not involved, who are watching from the outside and to those going through the process. But how these words are use is massively important. I shall demonstrate this by telling you the story of why I am disabled.

My parents tried to get pregnant for over three years, and where over joyed when they got the news that my Mum was expecting. They spent the next nine months decorating my nursery and buying lovely baby clothes. On the day of my birth, my Dad ran up and down the streets of Luton going up to strangers, giving them cigars and exclaiming “I’m a Father!” and “It’s a boy!”. He even purchased a tiny Luton Town football strip, as he had planned my future career already. Mum always calls it “One of the happiest days of my life”. However in only eight weeks time I was rushed to hospital, as I was having serious trouble breathing, and a huge cancerous tumour was discovered. My parents were told it was pretty definite I was going to die, but there was a new treatment that might give them a few more years with me. So after a massive operation, the next five years were spent ferrying their much wanted little baby around the country to be pumped full of toxic chemicals or shot with massive doses of radiation, with the dream of a little more time together. Then after those five years, when they were told that the treatment had worked and the cancer was totally in remission, my Father suddenly died of a heart attack.

Now I know that is a tragic story. Not only because I lived it and I have a heart, but because I have been giving autobiography to publishers and agents recently and they all say “What a tragic story”. Yet it is my story, and I kind of feel it is much more a story of what people are capable of. Not brave or courageous, but more aren’t we just amazing. I know that if this was being made into a TV documentary, the desire of the production team would be to focus on the tragedy of the situation. Poor sad parents, poor brave little cripple boy, and the tragedy of loosing the Father. Move over Eastenders, this is TV gold. But how ever much it is tragic, it is the events that are sad. Not the fact that I ended up disabled. That was amazing and joyous, as everyone thought I’d be dead by the age of five. Surely everyone who finds themselves disabled, especially after injury or illness, is wonderful… as the alternative is death!

It is a difficult line to tread for the media when covering such a story, but it a very important one. When they make the fact that someone is disabled, or has become disabled the tragedy then they do everyone watching a massive disservice. However much the huge car crash is tragic, the fact that the driver or passenger ends up disabled is much more desirable than a funeral service. Why? Because if the viewing public is continuously told that becoming disabled is a tragedy, then they see it as something sad and worthy of pity. They also find themselves fearing being ill or disabled, and we all know what humans do when confronted by things they fear. So whenever the media tries to cover stories about disability they must ensure that however sad the story is, they word the piece so that it is the events that are sad and not the out come.

I did plan to go on to explore the kind of content that TV goes for when exploring disability and illness, but I really want to cover another word first. That word is Freak. Last night Channel 4 transmitted the sports programme “Freaks of Nature”, which was a re-edited version of the superb “Inside Incredible Athletes”. I thought that C4 had kind of lost the plot a bit when they used the term “Freaks of Nature” to advertise their Paralympic coverage and the Inside documentary, but then to use it to name a shortened version of an already shown program really sets alarm bells ringing. I really hope that someone at C4 starts trying to make sure that everyone involved with making their Paralympic output has an understanding of the correct use of language when covering disability. You see, the word Freak is the same as Cripple and any medical term used as an insult, such as Spastic. We can use them to talk about ourselves, but no one else can. It’s the same as Black people and the “N” word. I have played in bands called Freak Show, and Freak U.K. (although that was more because the initials spelled FUK and we sold a shit load of T-Shirts) and my good friend Mat Fraser has performed a series of theatrical shows using the word Freak. But we can, it’s our word. Unless everyone involved with the C4 program was disabled, they needed to choose a different name. Especially as they had already called the show Inside Incredible Athletes, which was fine. Another reason why FON was such a shite name for the doc, was it just showed that Paralympians aren’t Freak of Nature but are so good because of their commitment. I used to work with Dame Tanni Grey-Thompson in the 90’s and could not believe the amount of dedication it took for her to be such an amazing athlete. It was nothing to do with nature, I can tell you. It was all her. So why not just Incredible Athletes?

I think when it comes to the word Freak, I can explain it best in the following way…

I can call myself a Freak, you can call me Mr. Scarlet!

Next time – Content and Cripples (another word only we can use!)

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The Paralympics, the Portrayal and another word beginning with P.

This week all of TV land has marked two years to go before the launch of the Paralympics with massive coverage of the event. Most London news programs spent the week featuring stories on Paralympic sports and the start of the build up to the historic event, and Channel 4 launched two shows that marked the beginning of it’s exclusive coverage of the Paralympics in 2012.

Now I’ve never been a big sports nut. Partly due to my interests being much more focused on artistic pursuits and partly as I have always found the sports fraternity’s obsession with impairment and over coming the physical side of their disability via physical activity a little off putting. So I watched all of the coverage ready to be let down. However I was actually really impressed. Yes some of the local news coverage was awful, with the usual patronising interviewers and scripts, but all in all even I found myself hooked to sports TV. Amazing.

The first dedicated show I watched was That Paralympic Show. This program wasn’t exactly my cup of tea, but I could see it was aimed at a younger audience and I am sure it succeeded in getting it’s target viewers excited by Paralympic sport. I don’t usually enjoy watching those shows where celebrities have a go a being disabled, but getting Alex Reid, the kick boxing husband of Jordan, to have a go at Dressage kind of made sense. Whatever I felt I could see the show tapped into today’s celebrity obsessed youth and might play a role in changing how young people see disabled people. And it had Ade in it so it had to be good.

That Paralympic Show

The next part of C4’s Paralympic build up was their flagship program Inside Incredible Athletes. When I read what this show was about I cringed. With it’s focus heavily on impairment and I dreaded how bad this show was going to be. Boy was I wrong. Yes, it did have it’s moments where my toes curled, but whether any of us politically aware disabled types like it or not disability sport does have to focus on what is physically different with the people taking part. Add this to the fact that many people in the disability sports world are fairly new to their disability and it is easy to see why it can seem little too impairment driven in it’s focus. However much the computer graphics explaining how various Paralympic stars disabilities played a part in their excellence really did ignore some of the politics of disability (Medical Model vs Social Model and all that), the superb way the sports where shot and explained more than made up for it. In fact I will go as far as to say that there were moments when even I got excited by the sports covered on the show, and that really is amazing. By the end of the show I was really looking forward to seeing how C4 will cover the event, and to watching more of their coverage in the run up to the Paralympics. I even found myself wanting to find out how to take up a sport. Maybe Dressage! (Wheelchair rugby is just too dangerous for this wuss!)

Inside Incredible Athletes

Sadly not all the coverage of disability this week was good. We were let down by drama. The BBC comedy crime drama show Vexed featured a story line where a wheelchair using criminal kidnapped a pop star and ransomed her, using how disabled people are thought of as incapable to get away with it. But it wasn’t another storyline where the baddie was a cripple that upset me. No it was the fact that another role for a disabled actor went to an able bodied thespian. Actor Dylan Brown, best known as the vampire Seth in Being Human, played John Paul the episodes comedy bad guy. I have to ask myself why do these able bodied actors see nothing wrong with playing disabled? Would they black up and go “I am de black maan”? I very much doubt it. I even auditioned for this part, but was told I looked too able bodied for the character. Well not as able bodied as some who was bloody able bodied! Time after time I hear from casting directors that there isn’t enough disabled talent out there, but surely this kind of show is where disabled actors learn their skill? I mean it’s not like the show was an acting master class or anything. A cameo role like this is exactly where up and coming disabled actors hone their skills. Not only that but having disabled talent playing disabled characters makes the show more valid. A real missed opportunity.

Vexed

So on the whole a great week for disabled people and the media. Hopefully the creative and exciting way disability is being covered C4’s sports output will change the way disability is portrayed through out the TV and film industry. Fingers crossed eh?

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