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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4 thoughts on “Epithany

  • I watched this on 4OD today. I thought another problem with the programme (and media presentation like this) is the complete muddling up of social and medical issues. You’d think with disfigurement, perhaps much more than other impairments, the emphasis would be on the social experience – the very social nature of what disfigurement is. But no, in this episode the tragedy is presented as an almost wholly medical one. Worst of all, we have to hear a exhausted and unwell woman cry out in pain as she’s having stitches pulled, and we’re left on a cliff-hanger about whether or not her nose will be lost. I really felt that poor lass was being exploited by the programme makers, on several levels.

    Sympathy sells, but sympathy totally disempowers. Nobody who feels sorry for you for who you are, can possibly see you as an equal at the same time.

  • Totally agree Goldfish. Time and time again we get boiled down to a list of what is wrong with us, without examining who actually says our differences are wrong. The implied tragedy of becoming disabled or physically different only exists thanks to the way society is made to see us. My wife has had a fantastic life (apart from the horror of being married to me!), and is one hell of a woman yet she has a huge scar, very similar to the ballet dancer in the show. She just got on with it, and I feel much of her confidence and personality came out of her difference. She is in no way someone that people should feel sympathy for.
    I also feel that this show totally ignores the fact that we are following someone who is still very early on the process of coming to terms with her new life. Anyone who has come to any form of disability, or anyone who has a condition that can change understands the roller coaster of emotions and feelings and experiences that are involved. Katie is still undergoing treatment, so she is still hoping that things may change. I know from my wife’s experiences that until you know that your scars will not magically disappear (thanks to a surgeon), you can’t even begin to form an set identity. So of course she is focusing on the medical stuff, as she is still hoping for medicine to live up to their promises.
    The main problem is that the people making the show should have an understanding of the psychology of disability, identity and illness. TV is not made by people who have any idea about such things, and they want to make good TV not necessarily valid TV.
    I feel upset that this show missed the point and took the usual route. It would have been massively important to all of us disabled people if it had got the balance right, or even near it. Maybe one day… maybe?

  • I feel I must add that what Katie herself is doing is great. To use her position to raise the profile and awareness of the experience of people with scars really makes sense. Her work is vitally important, especially as we live in a world that is growingly obsessed with perfection and beauty.
    We should all support her and what she wants to do, but we must also try to make the media understand how important portrayal is to stories like this. I really wonder how much say she has had in this program. I know how little editorial control I had in any of the shows I was involved in, so I am sure she is just as mortified by some of the programs content. I expect she sees it as a necessary evil in her fight to make society accept those with scars.
    We should support her, and back her so she can fight for a better portrayal in future.

  • Totally agree, Mik and I agree about Katie – she’s doing amazingly well, dealing the medical stuff, coming to terms with disfigurement and channeling her energies into a project to help others, as well as facing the world again after the assault (which I imagine may have been scarier than the stares at first).

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