Tuesday, 22 March 2011


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.

Monday, 21 March 2011

Perfection in Imperfection.

Tomorrow night Channel 4 airs the first in a new series called Katie, My Beautiful Friends following Katie Piper, the TV presenter who has facially scarred after an acid attack, as she meets young people who also been scarred. I haven't seen the show so I can comment on it yet, but this is a subject close to my heart. My wife Diane was scarred after she was scalded as a young child. She was burnt all over her right arm and her left side, and after a series of surgeries to ensure she could still use her arm was left with a scar that runs from her shoulder to her hand with other scars on her back and bum.

I met her when she was 18 at the Electric Ballroom in Camden, and fell in love with her straight away. It took me 6 years to get her to go out with me, mainly due to my crap chat up technique, and we have been together for nearly 16 years. She is one of the most amazing people I have ever met, both internally and externally. She is as beautiful on the outside as she is in on the inside. If I am truthful, I saw her scar on that first night at the Ballroom and knew by the way she had it exposed for all to see that she was going to be the girl for me. Not only was it beautiful scar (I must admit I do find scars sexy) but I could tell from the way she held herself that she was a proud strong woman. There was no apology or desire to hide her scar. She defiantly had it on show, and I knew it was to dare someone to comment on it.

I was right, and as I got to know her I witnessed just how weird people can be about scars. I have been disabled since birth, and thought I had seen it all until I met Diane. My first experience of just how hateful people can be was when a woman started screaming at Diane to hide her scar, from the other side of the street! This woman was offended that Diane was walking around with a her scarred skin on show, but what really shocked my was that this woman was black. For some reason I thought she would have understood how awful it is be discriminated against due to something only skin deep. But it seemed that anyone might feel they could react to seeing a scar in ways that changed the way I saw the world. Once a homeless man, who was sleeping rough in Soho, stinking of booze and urine with a dog on a string and who was also blind in one eye shouted out to Diane asking why didn't she just chop off such an ugly arm. The fact it worked perfectly didn't matter. Time and time again she would be the target of anger and vitriol purely because she did not hide her scar. Apparently this was nothing compared to the reactions of people to her scar when Diane was a child. What kind of person would try to make a child ashamed of being scarred?

But Diane was not only not ashamed, she was proud. She trained through out her youth to be a ballet dancer, and never let her scar stop her. Not only did she dance but she also acted in plays and films, and after we got together, she started modelling. She appeared in photo shoots for major magazines, fashion companies and publicity campaigns. We started up a band called Erotics, and began playing gigs all over the UK. She was the lead singer and was a superb front person. No one even commented on our female lead singer having a scar (although they did freak about me being a wheelchair user - so I have no idea what that says about the music industry).

What was great however, was that we gradually noticed a change in the way people reacted to her scar. Slowly it went from people reacting badly to truly positive. It became almost trendy. She did a fashion show, and a make up artist actually flew from Holland just so he could do Diane's make up. I can honestly say it has been years since some even mentioned Diane's scars, either to her face or privately to me.

I must admit while I am pleased that TV is actually doing something to confront the way people who have been scarred are treated in society, I feel it is really sad that other people are still finding themselves confronting attitudes that we thought had gone the way of other discrimination. I just hope that this show helps other people gain the strength and confidence that oozes out of my wonderful wife.

Personally I feel that only those who could be described as imperfect are perfect. I have mixed with all manner of so called "Beautiful People" in my life, and have found them all to be wanting. But not only is my scarred wife a fantastic, talented, stunning person on the inside, but her scar makes her even more beautiful on the outside. Like a work of art created by accident, medicine and nature. That is how I feel we should see all scars and deformity. True perfection lies in the imperfections.

Katie - My Beautiful Friends
The Katie Piper Foundation
Mik Scarlet Music Projects - Full Back Catalogue

Wednesday, 16 March 2011

Glory Days

What fun we had! Last night a gang of us went to Koko nightclub in Camden to see one of my favourite bands from the 80's - Blancmange. Definitely one of the best gigs I've seen in ages. I had forgotten how much Blancmange had written the soundtrack to my late teens. As well as the obvious "Living on the Ceiling", the classics just kept coming. "God's Kitchen" "I've Seen the Word" "Waves" and my personal favourites, "Game Above my Head" and "Feel Me". I had the time of my life, my wife danced all night and even my brother jigged about a bit. For my brother and me it had really fond memories as we saw Blancmange together at the Queensway Hall in Dunstable way back. They were superb then, and they haven't lost any of their talent or stage craft. I loved Neil Arthur's dry northern wit between each track. It is the same humour that runs through out all of the their tracks, old and new.
Of course Blancmange hadn't just decided to tour with old material.They had a new CD, Blanc Burn (pronounced Blank Burn - like Blackburn - as Neil kept reminding us). It continues where they left off. Full of classic synth hits, with their own brand of lyrical wit Blancmange are back and on form. I got my copy of the new CD at the gig.
As an old synth collector and musician that has been finding it hard to feel inspired lately, I woke up this morning singing to myself filled with ideas. Blancmange always did have that effect on me. So I won't write a great big blog, as I have tunes to bash out. Check out their website for news, music and even a free download.
Before I go and annoy my neighbours, my I want to send my wishes to Stephen Luscombe, their keyboard wizard. He has just been diagnosed with an abdominal aortic aneurism and was too ill to appear last night. It is effecting his spine and I know how that feels, so get well soon mate.

Monday, 14 March 2011

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?

Tuesday, 1 March 2011

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.