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.

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The Upload begins….

I am currently at the start of a marathon encoding session, with a pile of old VHS tapes filled with some of the programs I recorded for TV. I thought I’d lost them, but my Mum found them all in the loft of our family home. It’s weird experience watching yourself from over twenty years ago. I never really watched myself when these went out, as it made me cringe with embarrassment, so having to sit and watch hours and hours of TV where a younger version of me smiles out of my TV screen fills me with a myriad of emotions.

The craziest thing, other than how young I look, is the fact the I have so many hours of TV footage with disabled people in it. Think of today’s schedules and we are invisible, unless it’s some kind of stare at the freaks type program (mentioning no names). This series of clips from Beat That really shows how far backwards we have gone. Beat That was a prime time kids series on C4 that got millions of viewers per week, yet it was fronted by a wheelchair user and had a mixture of kids, some disabled, some not. The disabled thing wasn’t really mentioned in the publicity or made a big deal of, and C4 was proud of the fact that their first kids series was fully inclusive without banging on about it. This was the future for TV. Disabled people would just be part of what you saw on your goggle box. They were really ahead of the game… so far ahead that no one has caught up, even today. Not even C4 themselves.

Actually that’s not really true, CBBC regularly has disabled kids on some of their shows and doesn’t make a feature of it. But they are the only ones. The second series of Beat That was transmitted in 1992, so it’s exactly 20 years ago yet there are still very few disabled people disabled people on our TV screens at all. Even if there is a change in the representation of disabled people on our screens in the next few months, with the Paralympic coverage, it will only be catching up to the place we were at two decades ago. Why did the TV industry drop the ball in such a big way? I wish I knew. I do know that for someone who was one of the best known disabled people in the media, I suddenly found it impossible to find work around the year 2000. Now everyone seems obsessed with New Talent, but most of the people that are discovered during the many talent searches that have taken place since Beat That went out ended up being ignored by the industry.

I think it is really important that everyone remembers that not that long ago disabled people were on our screens. I mean between Beat That and the BBC disability show From The Edge I alone was on almost every week. And there were quite few other well known faces too. Whatever does come along in the next few years, we mustn’t forget that we are only playing catch up.

Over the next few days I plan to put up some of my music stuff too, and if you think the TV industry doesn’t like disabled people you wait until I tell you about the horrors I witnessed from music types! Stay Tuned Folks!

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Epithany

I am writing this at 5.15am after laying in bed watching the green numbers on my bedside clock inexorably click forward for many hours, my head full of thoughts. I found myself unable to sleep after watching the Channel 4 program Katie: My Beautiful Friends, which I was looking forward to(see my last blog for why). However much I wanted to enjoy the show and hoped it would play a part in changing the attitudes towards people who are scarred, the show fell short thanks yet again to the use of language. The old clichés of bravery, courage and inspiration peppered the script, and as I lay there considering why C4 had gone down this road yet again, what I could do to explain why this kind of language is so damaging and who I could contact in the media to make my voice heard, I had a realisation.

Suddenly I not only grasped the reason why this kind of language had such an effect on disabled people but how the use of language tied our minority group to all the other minorities out there and how charities played a massive part in continuing this use of damaging terminology. I have already stated how language effects that way disabled people are thought of in society. The word brave, for instance, when used to describe some who is disabled leads the non disabled to a series of preconceptions about disabled people, their lives and what it is like to be disabled. It also creates fear that if they faced a disability, they might not find the level of bravery within themselves to be able to cope. Both these thought processes lead to a feeling of otherness around disability, and create barriers. As well as that it forces disabled people to either fit into the brave category, and so if they appear to be so by achieving some amazing feat or battling through with a smile or holding down a job then they could be described as a success, but if they do not do any of the above, not only are they not brave but they are also a failure. Language like brave has no room for explanation or exploration of experience. Disabled people face many barriers to opportunity and equality, and these can prevent people from achieving the acts of bravery and inspiration that the media craves from super cripples. In truth this is real experience of disabled people in our society.

I know that I have on occasion done things and acted in such a way that I could be described as brave and inspirational. In fact as I laid there in bed I found that if a described my life in the right way almost every moment of my life could become an inspirational story of courage in the face of adversity and triumph over tragedy. Actually you could do so for every living being on the face of the planet. Not just disabled people but everyone. We all battle against problems, we all face adversity and we all have our victories, no matter how small. You could use the language that is now used to describe disabled people to describe anyone. Especially other minorities. Surely aren’t all ethnic minorities brave and inspirational to exist and succeed in society made up mainly of white people, many of whom are hostile towards people from other races? Doesn’t every member of the LGBT community battle courageously a society of straights that see them as weird and different, and even as wrong and dangerous? Aren’t religious followers inspiring to exist in a society that is turning it’s back on faith? But then surely aren’t those who do not believe also an inspiration as they reject millennia of doctrine? Even though all of these statements could be considered as true, we very rarely hear them used. The media would find itself in hot water if it did so, especially if it did it time and time again.

So why does the media feel it can get away with it when it comes to disability? I think the reasons are two fold. One reason is that there are not many disabled people working in the media at the minute. The majority of people in the media are able bodied, but more than that they are even more obsessed with perfection than society at large. We are always being told how the media plays a role in creating issues with young people around body image due to portrayal and have been recently reminded of the pressure on presenters to stay young looking, so it is obvious how they see and cover those of us who are obviously different. The media also is driven by the need to create stories. How many meetings have I been in where the air is thick with terms like “narrative” and “jeopardy”? They are so focused on whether the story has media impact they ignore it’s wider impact. But then again, how would they know? In an industry with so few disabled people in it, then how will the majority of able bodied media types know what damage something as seemingly innocent as language can do? We all need to make our voices heard about how unhappy the use of this kind of language makes us. We all know what happens if TV presenters use the wrong kind of language about another minority, so why aren’t we kicking up a stink when it happens to us?

I have found recently that the few disabled people that are actually working in the media find it hard to question the way the media portrays disability. Partly as they are ignored, but also because raising the issue can risk their jobs. I know how unpopular I have made myself in the industry on this issue, and know how that has impacted on my career. Maybe if we all shouted as loudly as I do on occasion then we might nip the current slide backwards in the bud. But I digress.

The second reason why words like brave, courageous and inspirational are used so often around disabled people is that this kind of language actually helps some people and institutions. Let’s face it, however much last night’s show was about the issues faced by people with scars it was also about someone trying to start up a charity. Charity needs donations to exist, and no one is going to give money to someone if they are perceived as being just like everyone else. If disabled people are portrayed as either brave and courageous, and so deserve charity as they are so inspirational, or tragic and pathetic, and so desperately need charity and support, then the cash will roll in. Charity is big, big business and charities that help disabled people are major players in this massive industry. So there is an incentive to continue the use of language that dis-empowers disabled people, all in the name of income. I must also admit that during my years in the media, many of my contemporaries have actually started up their own charities. They all claimed to want to help disabled people, and they also felt that it was time that this support should be provided by us and not for us. I have always felt uneasy about going down this path, partly because I feel that there should be no need for charity and partly because I mistrust the motivations behind such an act. However much I want to be believe the good intentions given I can’t help feeling that this is in some way just a route to a more secure income.

Don’t get me wrong, I don’t feel all charities are wrong and evil. I am a patron of the Neuroblastoma Society, who raise money to research into the cancer I had as a child and support those families touched by it, and of the National Association of Bikers with Disabilities, who help get disabled people into biking. I also work closely with the Alliance For Inclusive Education as I believe that all children should attend mainstream schooling, as I myself did. What I do feel is that charities do need to play a more vocal role in fighting to ensure the correct type of language is used when discussing disability. They have to start using their financial muscle and political clout to explain to society as a whole why the language used to describe disabled people can be a major barrier to us, and in turn to everyone. Let’s face it, able bodied people are just us the day before the accident or illness. Disabled people are the only minority to exist in every other group out there. If you get it right for us, then you get it right for every one.

Right, that’s got that off my chest. Back to bed.

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Out of Touch? Part 2

I would like to say sorry for being away for a while (mad busy) and thanks to everyone who commented on my last blog. I’m so glad that there are people who do believe that how we are portrayed in the media is as important as just being portrayed.

Part of why I have been busy recently is that I was attending a conference put on by the 2012 games organisers around diversity. During the day long round of back slapping and self congratulations I discovered something that helped explain why so much of the recent portrayal of disabled people in the media has been so wide of the mark. Both the Olympic and the Paralympic games have core values, that are used the publicise the games, and to help the public understand them. The three Olympic values are “Respect”, Excellence” and “Friendship”, while the Paralympic have four core values. They are “Equality”, “Determination”,(they go down hill from here), “Inspiration” and… “Courage”. No wonder our media is full of brave super cripple stories, if one of the biggest events in the disability calender is promoting it’s members as inspirational and courageous. How the hell can we get this equality they calm to want if the two games have such different values? Who the hell decided that on the Paralympic values?

I found myself lecturing the conference on how offended I was at “courage” and “inspiration” being a core values of the Paralympics. I am sure you all understand why but I shall explain to any readers who don’t get it. Using the word courage when discussing disability creates the perception in the able bodied that anyone living with a disability is some how brave. Much of the discrimination faced by disabled people is due to an unspoken fear of disability and the possibility of becoming disabled. Part of this fear comes from the doubt that those feeling afraid could find the courage to cope if they found themselves disabled. Yet the truth is that us disabled people aren’t some kind of super hero breed. Let’s face it, what choice do we have other than get on with it? I suppose we could pay a visit to Dignitas, but other than that living with a disability is more pragmatism that bravery. Of course we can show courage, but only in the same way a every body else can.

But courage doesn’t even fit with Paralympians. They might have dedication and commitment, and show excellence but not courage. Giving your life over to pushing your body to be the best you can be at a sport has no real elements of courage that I can see. They might be inspirational, if you want to be a sporty type, but for people like me who find all sport truly tedious, they just seem to be bit too tied up with themselves. Personally, I have found that most disabled sports people are so focused on sporting achievement that they have no real interest in things like politics or how what they do effects other disabled people. The fact that have dedicated themselves to an event that uses such offensive and damaging language to describe them proves just how out of touch with disability politics they are. Not one has gone public with their complaint or made a stand in any way. It’s left, yet again, to mouthy non sporty gits like me.

There is proof that is starting to effect other disability events too. On the website of this year’s Naidex it announces that visitors can “Hear inspirational stories from role models beating their disabilities”. Argh!!!!! Let’s not even mention that TV news standard about injured soldiers climbing something or other.

So, please dear reader, don’t just post your comments to me. Make your voice heard. Mail and write to anyone who uses any language that you find offensive. Phone in to radio and TV talk shows, complain to newspapers and magazines and blog away on the subject. Let’s make a stand, or a sit at least. I know that I shall be pursuing any avenue I can think of and bugger my career. I have never been able to keep my mouth shut to get myself on, and nor shall I. I have no desire to look back and see a world that has gone backwards and know I did nothing to try to stop it. No I’ll let the Paralympians do that.

So guess I won’t be invited to the Opening Ceremonies now, eh?

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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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Saints, Sinners and Commissioning Editors

After a weekend of trying to stick to my new year’s resolution of keeping fit, that involved a four hour wheel in and around Central London, I have spent the day stuck on the sofa with back pain. When they say “feel the burn” I don’t think they mean it quite like that, but that’s the price you pay when you push yourself that hard that quickly. Hopefully over the next few months I will be able to exercise without ending up knackered.

The day on the sofa was accompanied by my friend the widescreen TV. I wanted to watch The Wright Stuff but they had Gillian McKeith on as a guest, and however ill I might feel I am not going to watch someone who made a career telling people how to eat only to become a total freak when she decided to revive her career by appearing on I’m A Celebrity. Totally tragic that TV celeb bookers see someone like Ms McKeith as a valid contributor on a show. Let’s hope tomorrow’s guests are better.

The Wright Stuff

Instead I flicked over to the BBC, and got caught up in the greed and avarice of Homes Under The Hammer. Funnily Lucy Alexander and I worked together way back when, when we were continuity presenters on the kids TV channel Nickelodeon. I know I shouldn’t like the show, but I do. Mixture of seeing how the houses are done up, deciding who you want to make money and who you dislike enough to see them fail, and an overpowering feeling that maybe you should be making something of your life. Of course when you combine that with seeing someone you worked with doing so well, when you career seems to have tanked big time it doesn’t always make a fun watch. Masochistic TV… that’s a new one huh?

Homes Under The Hammer

Homes Under The Hammer, was followed by a show that seemed to come right out of the worst kind of sensationalist TV hell, Saints and Scroungers. The bulldog with a heart, Dominic Littlewood presents this bizarre show that explores the world of benefits. “Exposing cheats and highlighting those who deserve to be supported” is the tag line that I imagine was used to get the show commissioned but I am amazed that a show like this is on the BBC. I fully appreciate that there are many people out there committing frauds on the benefits system, and that is totally wrong. When I was a youngster I worked for the dole office and saw people who were obviously working and signing, and I knew how hard those who investigated the frauds worked. The problem I have with this show is the way it is worded. Way too sensationalist.
The fraudsters are treated as the ultimate criminals with little background information, but those who need financial support are treated even worse. Patronised in a way that I last saw in the early 80’s. Most of these people should have been helped by the system to get the benefits and help they so obviously needed and deserve. That little issue annoyed me, that and the total omission of how massive the amount of unclaimed benefits run to each year. We always hear how much each fraudster cost the tax payer however. The best way to describe the show is it’s the kind of program that the Daily Mail would make.

Saints and Scroungers

I just feel that this kind of show feeds the current obsession with cutting benefits, and is a little too political to be made by the publicly funded BBC. Time and time, each of the fraudsters are claiming what is always called Disability Benefits”, yet anyone out there who has applied for these knows how hard they are to get. There never seems to be any examination of how these people managed to get benefits they weren’t entitled to, or what they had actually done to commit their frauds. Just a series of films of people who claim “not to be able to put on their own socks” playing golf, or running marathons or whatever super physical activity anyone getting benefits shouldn’t do. There is a kind of subtext that anyone claiming benefits is dodgy unless they are in need of 24 hour care. And the experts who give their opinion on a claimant’s eligibility never seem to be doctors or medical experts, but are OT’s and Physiotherapists. Professionals, but not experts.

Of course fraud must be stopped and those who deserve it must be helped, but if the BBC is going to make a show like this it is essential that they film it in a way that empowers those people who need help. It might make a great show to portray the sick, disabled and old as desperate, but it does nothing to the bigger picture. It shouldn’t be that to deserve state assistance you have to be a tragic figure. The benefits system is there to create a level playing field, and all of the “Saints”, who really are the kind of people that the system was invented to support. They could just as easily be included without the histrionic language and gnashing of teeth.

Sadly we keep going back to the issue of language and portrayal but until those who make the content on our TVs understand how important it truly is, moany gits like me will keep banging on it. Let’s face it, show like Saints and Scroungers could still exist while ensuring that everyone on the show are not shown as either evil law breakers, who we are made to hate for their terrible crimes, or sad pathetic outcasts, who we obviously have to weep for their tragic problems. Criminals are doing wrong and that needs to be stopped, but maybe looking deeper into each story might make the perpetrators more rounded. Those who it seems are being let down by social services and the benefits system shouldn’t really need to be assisted by a TV show to get the help they need. Maybe a show exploring how many people do fall through the gaps might really be a public service. Let’s face it that’s what the commissioning editor saw this show as when they gave it the green light.

It’s just hit me that if I keep on like this I’m going to end up as a cross between Nabil Shaban and Mary Whitehouse!

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"My Brother and Me" or how to make Mik so angry he can’t rant!

Last night I sat up in bed trying to write something about the BBC3 program “My Brother and Me”, but I found however hard I tried a mixture of anger, sadness and incredulity meant all that I could manage was an incoherent list of why this program was everything that goes wrong when TV decides it has to “do disability”. Now in the cold light day, after a good nights sleep and with the anger in check (hopefully) will give it a second go.

I would normally put a link to the show, and advise you Dear Reader to go and take a look, but I have mixed feelings about doing so in this case. While I want to make sure that if anyone hasn’t seen the show that they do understand why this show was so bad, but I would also hate to be the one that made anyone else have to hurt their soul and waste any precious life watching this example of very bad TV. I am also worried that the producers of the show and the BBC itself may take the number of hits the show gets on I-Player as a sign of what a success it was. Yet I suppose no one wants to be the kind of person who complains about something they haven’t seen, so I apologise in advance. Maybe read the blog and then decide whether to burn the scar of this show into your memory.

Why did this show offend me so much? Three main reasons.

Firstly, the focus. Instead of the disabled person being the key character in the program and driving the story, the focus was around the young TV presenter Jeff Brazier – yes I have never heard of him either – and his “Project” to get his disabled brother to be more independent. Now I understand that Jeff’s brother Spencer’s Cerebral Palsy means that speech is very difficult for the teenager, and this will have caused the show’s producers a headache around how to shoot the program, and that BBC3 is a youth channel and celebrity sells with today’s youth but the main focus when exploring disability in a show should always be the disabled person. This program gave too much weight to the thoughts and cares of the able bodied protagonists and didn’t really explore what it is like to be a disabled teenager who wants to break away from his over protective Mother. Or what having your perfect brother suddenly decide that they were going to make you a project and spend three weeks of his life nagging you to do things the way he thought was right. Yes that is that is what this show is about! Nice huh?

The second problem is portrayal. This show gets it wrong from the offset, by making it a program about someone able bodied trying to make a disabled person’s life better with the mantra of “it’s for your own good” running through every second. It could have redeemed itself if it had shown disability in a positive light and empowered young Spencer. While there were a few great moments, mainly when Spencer got so fed up with being told what to do that he got angry, nice one mate, most of the show either had an air of “poor little thing” or was all “stare and be amazed at the disabled freak while you gaze longingly at the wonderfulness of the able bodied TV star”. All the able bodied people in the show were apparently successful, whether it be as a C-List celebrity or as a Mother, and only the disabled person was the one needing fixing. Ignoring the fact that if this disabled teenager was too dependent of his mother, it could only have been her that made him that way completely, and that his AB brother was an arse of the greatest order!

The third flaw was… just about everything else! What got me most upset was what a terrible waste it was. One of the worst times in any disabled child’s life is that period when you want to get more independence. I remember how hard I fought to break away from my Mum, and showing this in a realistic and thoughtful way on TV would not only have helped the wider world have a deeper understanding of what it is like to be a disabled teenager and thus a disabled adult, but also given hope to anyone going through that awful period themselves. It would have educated and entertained without being patronising or damaging. But no, instead we got a vehicle for a celebrity to show what a great guy he was. The disabled person became almost a plot device. Luckily Spencer fought through and was the only redeeming thing in the show. Even with speech proving difficult, he came across as knowing what he wants for his life, and understanding the truth of how he will achieve these goals.

I feel that the show’s producers really missed an opportunity. The part where Jeff is trying to get Spencer to use a speech synth machine really demonstrates where the show goes wrong. Spencer is not keen on using one, as he feels it makes him more disabled, but he is nagged into trying one by his do gooding brother. He gives it go, and you can see that while he enjoys being able to communicate easily, he is still very unsure about how such an aid makes him feel about himself. Do we explore this? No. Do we even mention what the issues are around getting such help and problems like funding? No. We don’t even get an real interview with Spencer using the voice synth that allows him to explore how he feels in depth. Instead what we get is Jeff nagging his brother to do a sponsored walk to buy the piece of machinery. No question of why he it isn’t provided it by the NHS, or what ways he could get it in an empowering way. When Spencer says he wants to just buy the thing, he is told off as this will mean he has no savings left. “No, charity it is for you young crippled boy!” This kind of thing really shows how everyone around young Spencer has absolutely no understanding of what it is like to be disabled. If I didn’t know better I would have said all the able bodied people it this show had never met anyone disabled, let alone brought up a disabled son or grew up with a disabled brother!

But the worst offenders were the BBC3 production team. Back when the DPU existed, the whole team wrote a set of guidelines to help TV producers cover disability in the right way. The plan was to make it impossible to create programs that got it wrong in the future. Sadly the BBC no longer use this fantastic document, and so we get stuff like Me & My Brother. BBC3 are the worst offenders. They just don’t get it. I was involved in a show for BBC3 a few years back, but it ended with a huge argument after the media studies graduate producer (don’t get me started on how media studies and how it is taught is one of the main culprits for the way disability is now portrayed on TV – maybe that should be a blog for a later date?) told me he knew how to do disability. Luckily I did stop myself from attacking him, and went instead for bursting into tears – yes that was how angry I was with the guy! The show did go ahead with one of the new generation of disabled talent fronting it, and was another BBC3 disaster. It just shows that no one at this youth channel gets disability. They want to shock and think outside the box in an attempt to appeal to the youth, but with no real understanding of the issues around disability or knowledge of how to film it they end up repeating, and even building on, their mistakes.

I just hope that someone at the BBC decides that enough is enough. Please, let’s hope that this is the last time we get such a damaging show made as part of the BBC’s commitment to community programming. Someone high up at the corporation must ensure that the BBC sticks to the standards that have made it famous the world over and needs to make sure that disabled people are portrayed with the same level of dignity, respect and understanding that other minorities expect now. I really feel that not being on our screens at all is preferable to shows like this being made.

Anyway, after reading all that if you are brave enough to take a look, here’s the link.

My Brother & Me – I-Player

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Disability & TV – The Mik Scarlet Lecture – Part 3

Before I explore the subject of content, disability and television I feel I must just quickly give my solution of the issue of the title of the C4 show “Freaks of Nature”, that I posed in my last blog. The answer is a question mark. “Freaks of Nature?” not only makes the program’s content make more sense, but also stops the casual viewer or listings reader seeing the show as saying that disabled people, or disabled Paralympians, are freaks of nature. Just a small question mark makes the show a more valid political statement on top of being a fantastic sports program. This really demonstrates how language is so important and must be paid very close attention. Not only when covering disability but at all times.

I’ve covered how to use language on TV but not what to talk about. But why not cover that first? Well, program content can be a case of personal taste and what appeals to one person may make another rush for the remote control, but the language used is vital whatever the show is about. In that case, why even try to explore program content? Because the way that content and individual stories are covered can change the way a program works dramatically.

Let me demonstrate by referring to a program I was involved in again. Sometime ago I went to the BBC with a documentary idea around the decision I had to make about whether to undergo surgery and to try to walk again. It was put into production with brilliant new up and coming deaf producer, Ally Scott. We wanted to make a show that really explored the issue and showed that it wasn’t such a cut and dried problem, as most people thought. The program would revolve entirely around my life, how I lived and we would explore what being able to walk might add to my life, if anything, and what it might cost me in time and commitment. There were plans afoot to film all manner of footage that showed the subject in a glamorous, positive and televisual way. We hit a problem when a misunderstanding between the production team and my surgeon led to the artificial hip being manufactured, at a cost of over £150,000. My surgeon was annoyed, to say the least, when we talked and I explained I felt I would not being going ahead, and he insisted that a new production team was put in charge of the program. This new team changed the direction of the show, and in the end it included three other people, all of whom desperately wanted to walk again. This was done for “balance”. While the show did examine the issue, it did so from a view point that made not wanting to be disabled normal and so reinforced the very attitude I wanted to dispel when I first approached the BBC. The show was well received but I know how massively important the program would have been if it had followed the original direction.

Many times disability makes it onto our TVs with balance as one of the driving forces behind how it is shown, yet that balance is there to reflect many of the attitudes that disabled people wish would change. We want to see our real lives represented, and that should be all of our lives and not just the areas where being disabled might have an impact. Also how one person’s disability impacts their life will differ from anyone else, so it is the elements that might be considered “normality” that ties us all together. For example, I get asked to get involved in many shows about how hard it is to find partners if you have a disability but I always ask are you going to include those people who didn’t find it hard and examine whether it is really that different for able bodied people who are lonely? I explain that I feel to make a show about disability, sex and relationships there needs to be balance (that word again – play them at their own game!) and if a program is going to cover the problems that disabled people might have when looking for sex and love, it must also explore solutions, compare what it is like if you looking for love and able bodied and show the good things, and even the benefits, that being disabled can bring to your love life. (For more details visit my website Mik Scarlet – Wheelie Sexy). Of course by doing this I scare off the production companies, who have a fixed idea of what such a program will contain, and hence no Mik. But at least I have my integrity. Good for the soul, crap for the bank balance.

Many shows portray disabled people as “tragic” or “brave”, even if they don’t use the language itself. Time and time again when we see disability on TV the program is focusing on someone who is sick (tragic) being cared for their by their wonderful children (brave), or a disabled child (tragic) who is fund raising for charity (brave), or a disabled soldier (tragic) who is battling to get up on his false legs so he can walk down the isle (brave) or something similar. But while TV has to have these personal stories running through it, especially in today’s reality obsessed culture, the bigger issues are never even mentioned. Why is the child being expected to care for their sick parent and where is the state provision in that care? Why does this charity exist at all? Why does the soldier see disability as such a negative thing that all of his time is spent trying to be fight it? How can society be shaped to make all of these people’s lives easier and fairer? These types of questions are key to changing how disability is thought of in society and I do not think it would detract from the show’s direction to bring up the deeper issues.

So as the Paralympics and Channel 4’s push to get more disability on TV gets closer, I hope that those involved in creating this output wants to explore those deeper issues. I have always wanted to see a show that goes into why so many newly disabled people turn to sport as an outlet. Mainly as I dived into the world of music and art after I started using a wheelchair, and truly thought “Yippee, no more sport” when I was told I’d never walk again, but also as I want to understand the psychological reasoning behind the choice. It’s the world behind the what we see that TV can help us understand and by doing so it can make a real difference to all of lives. And do it while creating entertaining and enjoyable programs everyone wants to watch. I also really expect some serious documentary programming that delves into how disabled people really live in modern Britain, and not just a load of positive puff pieces about super sports personalities and how great everything is.

Well that’s the end of my exploration of disability and it’s portrayal on our TV screens for now. It’s subject I know I will come back to in the future, especially when I see something that I feel misses the mark. I know that it is a subject that is high on the agenda of many disabled people out there, and I would love to know what you feel about this important subject, so please comment below. I also plan to examine how disability is covered in the print press, magazines and other forms of media in the near future, as well as why we seem to be so poorly represented in industries like music and fashion. Please watch this space.

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Television & Disability – The Mik Scarlet Lecture – Part 1

Last night watched the Huw Wheldon Lecture with Dr Brian Cox OBE. As my wife Diane is currently studying for a degree in Physics, and so I am becoming interested in science by osmosis, we tend to catch whatever programs he is involved with. Not only is the Coxster one of the sexiest men is science (as I am told repeatedly by Di and her friends), but he is one of the key movers in making science more popular and understood by society. When I saw he was giving a lecture on how science should be portrayed on TV I knew I had to catch it. Finally a program about science where I would be as knowledgeable as my wife.

Of course Brian, and as someone who regularly visits my front room I feel I can call him that, didn’t let us down. The lecture was fantastic explanation of how good science programming should be made. Let’s face it, Brian Cox is one of the leading Physicists in the world today, The Wonders of the Solar System is one of the best science shows ever made, and with the help of his wife Gia who works in the media, Dr Cox (more formal now) is one of the best people to explain the direction that science TV should be moving.

Royal Television Society Lecture – You Tube – Part 1
Royal Television Society Lecture – You Tube – Part 2
Royal Television Society Lecture – You Tube – Part 3

After watching the show, I found myself wishing that someone could do the same for the direction of disability in factual and documentary TV. As I can’t get a TV company to give me 40 minutes of air time, I shall try to address how TV should deal with disability in blog form.

The first question that’s needs answering is that of language. Whatever the story being covered, what language is used changes the way that story is perceived. Let’s take an example. Say a local news station ran a story about a disabled child raising money for charity. Now having seen this story many times we all know that words like brave and courageous will pop up somewhere. The problem with words like that is context. If the child had done something that anyone might call brave or courageous, such as climbing a mountain or a parachute jump, then maybe such words might be OK. But if the child has just put on a jumble sale or done a sponsored swim then these words imply that the fact someone disabled has done these things is some way different that if it had been an able bodied child. This is not the case. The story should be about what a thoughtful child this was, and almost ignore the disability. Why? Well, the focusing on the disability makes the good deed a side story to the fact a disabled child can actually do things. It continues a belief that anyone disabled is less capable, and that this disabled child is uncommon. There is also a more subtle issue. It creates an impression that any disabled person who does not push themselves to do such uncommon tasks are in some way less. As disability is already thought of as making someone less of a person, this kind of language entrenches this attitude. As I have already said, the focus of the story should be on the fund raising and not on the disability.

This focus also carries over to the stories about people fighting illness or coming to disability. Those who are in this position are not brave or courageous. Actually most people will fight and try their hardest to cope. This is demonstrated by the fact that so few people do kill themselves or pop off to Dignitas. Of course it is hard, and I do understand that it can help your state of mind to think of yourself as brave during a dark time. But I know from personal experience that it can have equally dark effects.

When I went into my wheelchair, I was always being told I was brave. It appealed to me to think of myself that way and helped me cope. But whether you are ill or newly disabled or your disability has changed in some way, you will come to a point when it does get to be too much. When it does, you find yourself not only depressed by the situation you are in but also by the feeling that you have let everyone down by not being brave any more. In fact the lack of bravery can make you feel like you would be better off not being around, for all concerned. It happened to me when I 17. I had been in my chair for 2 years, and had coped very well (and bravely) with the illness, the surgery and readjusting to life. Then one day I found myself wondering would I ever have a girlfriend. I was sure no one would want to be with a cripple like me, and I crashed into a depression. Then I felt a total failure. Not only was I going to be alone for the rest of my life, but I was also a coward. I considered killing myself, and even prepared everything. I cut the cord of an electrical appliance, plugged it into a socket, ran it to the bathroom and ran a bath. I was going to get in, and drop the cord into the bath. It was only the fact that my parents would be the ones who would discover me that stopped me. Typically, within a few weeks I had a girlfriend and I realized that the whole “brave” thing was foolish.

At that time disability never seemed to be on TV, so this was the result of just the language used by my family and friends. We now see soldiers coping with horrific injuries and disabled sportsmen and women as strive to be the best at their chosen sport, continuously being called brave and courageous. I know that it will be having a much greater effect. Especially as these types of people have mind sets that revolve around performance and excellence. Imagine how it will effect them when they feel that they hit a low point, and have become less by no longer being brave.

Not only does it effect those who are disabled or sick, it also creates an attitude towards disability and sickness that has an effect on all society. Anyone who is not disabled or sick is sure that they could not be that brave, and so they begin to think about the subject with fear. They are sure that if it ever happened to them they would rather die, mainly as they doubt they could cope. If the media showed that the majority of people face such a life changing event in the same way as these soldiers and Paralympians do, it would make disability much more accepted and understood.

The reason why I know people would cope is because it’s why humans have evolved to be the most advanced life form on the planet. We adapt to pretty much everything that’s thrown at us. Also it would mean that when these soldiers and sporty types hit a moment when it gets too much they won’t find themselves feeling like a failure for not continuing to be stoic.

Now that’s a lot to read through, so I will stop there. Next time I will look at words like tragic and examine the subjects of news stories and documentaries. So stay tuned.

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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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