I can’t wait for Maggie to reach the age where she’s taking part in the Paralympics, shooting baskets or swimming or hurtling down the track on some super bouncy legs or whizzing round the volleyball court in her cool, streamlined wheelchair while the crowd cheers her on not only for her athletic prowess but for the glowing, inspirational face of positivity she wears every single day of her life because, hey, being disabled is no barrier, you’ve just got to have a dream and believe in yourself and be one hundred and seventy-nine per cent sure that you’re no different, not really, from everyone else out there because, at the end of the day, it’s about fighting and winning and loving life and taking on challenges and...
I have a problem with the Paralympics. Or, rather, a problem with all the crap we have to hear about it every day. I’m sick and tired of seeing muscular, fit young men and women with missing legs telling us that disability is just, y’know, one of those things they have to deal with. As they zoom about in their funky wheelchairs, oozing BBC-approved positivity.
I have a problem with the Paralympics because it seems to me to paint quite a false picture of what disability – real disability – is like for so many people. Disability, for them, isn’t about positivity and treating life as some kind of Hollywood script where a belief in one’s self is all that’s needed to win the day. Disability for them is a life of sadness and pain and loneliness and poverty. And given what’s happening with the cuts, it’s about to get even worse.
I have a problem with the way the Paralympics seems to say to those disabled people who aren’t athletes – who have absolutely no hope or even desire to be athletes – that they’re somehow letting the side down. I know Maggie will never be able to do the things I described above but it should be enough that her achievements will be small. To reference Frankie Boyle’s joke about Lewis Hamilton’s brother: if she ever managed to drink from a cup, that’d be something truly amazing. But will she have to feel guilty and sad about the fact that that will be a relatively small achievement compared to, say, running the 1oo metres?
One of my biggest problems with the Paralympics is that it claims disability, and notions of disability, for itself. By which I mean: there’s a world of difference between someone who has lost their leg below the knee and someone who is blind and deaf with quadriplegic cerebral palsy. Yes, the Paralympics raises awareness of something called disability; but it’s not the same disability that many people have to live, and suffer, with.
I think, at heart, it’s about me being suspicious of the value of the Paralympics. Because when they talk about raising awareness of disability and how it gets disabled people in from the shadows, I think there’s a danger that severely disabled people – the ones you never see, the ones who really suffer – are going to be left in an even darker place. Because not only will they not fit in with ‘normal’ society and people, they won’t even fit in with these healthy, positive people who are rapidly becoming the new and public face of disability.
I don’t know if I’m right about this, by the way. I could be totally wrong. Maybe those media-friendly disabled people with muscular torsos and glowing, happy faces are right: maybe they are going some way towards creating a society where disabled people will fit in as much as everyone else. Maybe all disabled people will be welcomed in with open arms – even those who don’t quite fit the picture.
As I say, it’s the picture of disability the Paralympics paints that bothers me. I wouldn’t mind so much if this was balanced a bit in the media with portrayals of how awful and terrifying and lonely real disability can be. I worry that we’re collectively buying into an accepted definition of disability that essentially states that it’s something that’s not that far removed from being able-bodied. Which could lead to a general feeling of ‘what’s the big deal about being disabled?’ And at a time when disabled people are also being attacked in the media for being benefit scroungers or malingerers, I think we’re in danger of creating just another false narrative about disability, however well-intentioned it may be.
By the way, I’d be grateful for your thoughts on this because, as you've probably noticed, I’m struggling a bit with what to think - and how to express it.
Great, closely argued post. I agree with your points.
ReplyDeleteI guess it's not a surprise that the media like stories with happy endings. You can see it in their coverage of everything, not just disability. To take just one example, our interventions in Iraq and Libya. No-one wants to hear about the civilian victims, and no-one wants to hear that things are complicated. They just want everything to have worked out OK in the end.
That may be what lies behind the sort of imagery you're talking about. People want to feel that disability has been somehow overcome, or done away with, and these pictures cater to that. We watch the dynamic images and we don't have to feel bad any more.
Since that narrative only endorses (or indeed mentions) those 'disabled' people who can do practically everything 'normal' people can, it's arguable they're not really doing anything to fight prejudice at all - and perhaps even reinforce it. Or, as you say, they might create a two-tier attitude to disability, where there are 'good' and 'bad' disabled people - those we like and approve of, and those we'd rather just kept out of sight and out of mind.
It's partly a problem of language. Lumping all these very different people, with different characters, with different bodies, all together as 'disabled' doesn't really do anyone any favours. It closes down the process of thinking about people as individuals, and enables pronouncements about 'the disabled'.
Just as with race, where we often hear about 'the black community' and 'black teenager Stephen Lawrence', it would be nice to think of people as people rather than representatives of some arbitrary and ill-defined group. Then we could appreciate each person's achievements as measured by their abilities.
No, I'm not sure about this either Paul. I get where you are coming from but isn't it just part of a general thing people have about wanting things to be better and admiring people who are perceived as being good examples of things? For instance, good looking, or clever, or good at sport. Roughly speaking - note the word roughly here - your problem with the Paralympics is that everyone says, thinks, and is also encouraged and pretty much conditioned to say and think, "well done for running a hundred metres with no legs", rather than "isn't disability shit". Is this not the same as Die Hard saying, "cops are resourceful, handsome men who stop bad guys" rather than "cops are racist, lazy thugs" or the message of Erin Brokovich being "working class people just need to hustle and use their street smarts and they can stick it to the man" as opposed to "if you're a single mother with debts, you're pretty much fucked". I like Die Hard AND Erin Brokovich because they entertained me and it was uplifting to focus on 'success stories' as an escape from reality. Now the Paralympics is real, not a film, I realise that (I had to look it up on Wikipedia, obviously) but it's the same kinda thing isn't it? I know you don't like sport much - me neither - but all sporting success paints a similar false picture of the general human condition, surely, where adversity can be overcome by endeavour. The added disability angle makes it more painful for you. I suspect the Paralympics is a good thing for disability awareness in general, despite its obvious focus on muscley armed wheelchair users - certainly better than nothing, a great hook for charity efforts, possibly useful in humanising odd-looking individuals that the general public might have otherwise dismissed or avoided. Not a lot of help if you've got a disabled daughter who's not shaping up to be a Paralympian, in fact downright dispiriting, from the sound of it.
ReplyDeleteMatthew. The points you raise are interesting. But it still remains that the Paralympics is in danger of becoming *the* story about disability and disabled people. It's already started to go that way. Obviously, unlike me, you're not a keen observer on all things disabled in the media so you'll have to trust me on this.
ReplyDeleteAlso, of course, you have little understanding of how invisible severely disabled people are. I worry that the Paralympics will make these people even more invisible.
I'm not saying scrap the Paralympics or anything like that. And I can see the positive elements of it. I just want us all to be a bit more careful about how disability is viewed. We can do that, can't we? Or am I asking too much?
More broadly (to take your comments about films) I have a problem with any kind of narrative that reinforces naive messages about positivity winning the day. But I have to say: your film comparison is a bit odd even as you concede that what we're talking about here is real people.
Oh, and 'normal' sport (especially in the Olympics) isn't about adversity being overcome by endeavour. Not at the point of being viewed by the spectator. It's about people at the peak of physical fitness trying to beat other people at the peak of physical fitness. Big difference.
Oh, and Matthew - you seem to be suggesting that my problem with the Paralympics is due to how Maggie is. That certainly has a bearing on it, yes. Is that a surprise? This blog is about Maggie, it's written by me and it's very personal. I even headed the piece: *My* Problem With The Paralympics. If you want a completely objective, non-biased view of disabled issues... well, you're not going to get it here. Which is not to say that I'm opposed to different views.
ReplyDeleteI was interested in the subject of your blog, because it's something that I have conflicting feelings about. Having spent most of my adult life with a chronic illness and almost 7 years of it as a wheelchair user, I probably have to warn you that I'm quite bitter and twisted about it all, so I may not be a good person to comment on what you've said. Anyway...
ReplyDeleteFirst, clearly, there's no comparison with my situation and Maggie's so I'm not going to say anything about that. I'll be telling you things you know only too well, too, so forgive me.
I think the main problem is not with the Paralympics itself but with our society and its need to compartmentalise people. One of the main problems that I found very difficult both emotionally and practically is that "disability" is not the neat description people seem to think it is. I'd say that every single disabled person has a unique experience of it and placing people in that category can be very unhelpful at times. Within that category are people whose disabilities may be the results of accidents or birth defects, some of whom are probably those "muscular, fit" young people you mention. Why shouldn't they have their day in the sun? My father had a cousin, Josephine, who was born with Down's Syndrome. She competed in athletics events (I'm not sure it was as good as the Paralympics) and won medals. It was a source of immense pleasure for her. I couldn't begrudge her that. Obviously, another category of "disability" is that caused by ill health. Sometimes it's temporary, sometimes not. Sometimes it's a condition with exacerbations and remissions. Society & the media find all that difficult, hard to put into neat categories (as recent coverage of "benefit cheats" demonstrates). And that's the real problem, in my opinion. Because a person who has disabilities is just that. Their disabilities may be an overwhelming part of their life and the lives of their family but they are still individuals, not part of some mythical "disabled community" (a phrase which I detest), not people whose lives are so hopeless and blighted that there is nothing else, but not shiny, happy athletes with sponsorship either. The one thing that I could not bear when I had my wheelchair was being seen as a disabled person. Sorry if that offends people, but it's true. I was vain enough to think that there was a bit more to me than that.
I don't see people competing in the Paralympics as being representative of anybody but themselves. When I was at school (and in good health) I was so small and weedy and useless at P.E. that I used to be sent to play tennis on my own. I used to hate athletic types back then. Most "able-bodied people" aren't like Denise Lewis or Michael Johnson either, thankfully. It would be pretty unbearable for us ordinary mortals. But most people wouldn't want to ban football either, just because they can't play like Messi. Another words, no athlete, disabled or not, can be seen as like the rest of us. The fact that some people who are disabled can do sport shouldn't be seen as a negation of the experiences of disabled people who can't.
One last thing. When I was at one of my lowest points, physically and in terms with coping with my problems, I watched Dean Macy win a silver medal at the Commonwealth Games. He was in such obvious agony but he was also so desperate to win that he overcame it. His pain was temporary, mine was (I thought at the time) permanent and probably much greater, but I genuinely found watching him to be inspirational and it wouldn't be too fatuous to say that it helped me change my view of myself and what I could do.
P.S. Wheelchair rugby is ACE, irrespective of its Paralympics status.
An interesting subject and one I don't think anyone could ever understand unless faced with having to look after a disabled person 24 hours. I can see both sides to be fair. I realise that these paralympic athletes are not your normal spectrum of severely disabled people (although I think it would be unfair not to recognise their disability compared to those with none) and therefore can understand how their competing COULD somewhat sway peoples opinions as to the real difficulties that people, and children like maggie, have. However, I can't help think that those people who think like that are narrow minded and easily led. For me, it raises awareness for a good cause and it shows that people can overcome their barriers. And Maggie drinking from a cup is, I would say, just as great an achievement if not a better one.
ReplyDelete(Had to split this post into two parts coz I over-ran the character limit...)
ReplyDeleteGreat post Paul, as ever, and some interesting & very well-expressed comments too.
My take on this, I suppose, is that - echoing some of Susan's points - the problem is with society and not with the Paralympics. Because basically, I think, and have substantial evidence to confirm, there are large sections of society (NB large sections - not everyone, and probably not most individuals) who don't give a f**k about disabled people. Really, really, really don't give a f**k about them. Sorry if that offends anyone but that's the conclusion I've drawn from 37 years of close experience. In some cases, this manifests itself as outright nastiness. More commonly, perhaps, it manifests itself as a basic self-centredness as demonstrated in conversations that you overhear on buses, at work and in pubs, and which - more seriously - is played out in the media and in people's voting patterns.
Sure, these chunks of society are happy to cheer some "heroic" competitor at the Paralympics. Sure, they'll chuck a fiver in a Children In Need bucket. Sure, they'll stifle a tear and go "aw, bless" at some poor little disabled kid being patronised on Noel's f***ing Christmas Presents, but when it comes to *actually doing something different* such as *paying more taxes* or *regulating the labour market* so that we have a *fairer society* and *make disabled people's lives better*, they won't.(sorry for all the asterisks but I'd be SHOUTING otherwise).
(For the apparent prevalence of this attitude, I blame Thatcher. Seriously. I know that's simplistic: so sue me).
You and others may disagree with the above, but for the sake of argument let's accept it for the moment and move on to the question of does the Paralympics help or hinder? As you've said, there is a real danger that the Paralympics paints a romanticised and completely unrealistic picture of life as a disabled person in Britain, which could be highly damaging. It has, as you say, nothing in common with Maggie's experience of life and *could* have the effect of marginalising Maggie, and other people in similar situations, even further. From a different perspective, it could have a similar alienating effect on other disabled people - for example people with the sorts of conditions which have no outward signifiers but which make it incredibly difficult for them to manage social interaction. Society's total failure to understand, empathise with or respond to such conditions mean that people who have them are frequently condemned to lives of lonliness, fear and confusion (I speak from very close family experience). I'm not, in any way, making any kind of comparison between those sorts of situations and Maggie's - merely illustrating yet another group of disabled people who have nothing in common with the experience or media profile of Paralympics athletes.
(Incidentally: there was some (slightly tangential) discussion about films earlier. I can't watch the film Forrest Gump, not because it has Tom Hanks in it (although that would be a perfectly valid reason on its own) but because, alluding to the family experience that I mentioned earlier, I know that I couldn't stomach watching some "heart-warming" Hollywood crap in which the "weird kid" becomes a hero. That's not what happens to those kids. They get shoved from dead-end job to dead-end job (if they're lucky), usually being relentlessly bullied and exploited along the way.)
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ReplyDeletePaul, on Twitter earlier you pointed me towards an article on the SCOPE website (for which many thanks - http://www.scope.org.uk/news/paralympics-attitudes if anyone hasn't seen it) which emphasises some of these concerns. An excerpt:
"But if the only disabled people that get any profile out of the games are Paralympians – and their feats of sporting success, then it is unlikely that the games will do much to change people’s perceptions of ordinary disabled people"
As it says: "if". Despite my earlier, bleak portrait of society's views of disabled people, I happen to retain a faith in most *individuals* - those outside the wealthy elite, anyway - to be basically decent, caring people who are capable of retaining more than one thought in their head at the same time. The Paralympics provide an opportunity as well as a risk: there is a chance to tell a story about what life is really like for disabled people in Britain in 2012, a chance to show the contrast between the beaming Basketball medalist and the penniless parents wondering how they'll scrape together the money to put some fuel in the car to take their disabled child to a respite setting. It's down to the Olympic organisers, the media and politicians to make sure that story gets told - so we probably shouldn't hold our breath. But if it does, I think most people who hear or read it, could engage with it, and learn.
Seen in isolation, I agree, the Paralympics are a distorting, distracting and potentially damaging smokescreen, but let's look at the wider context. The Paralympics *do* put disabled people on prime-time television. They *do* show disabled people striving, succeeding, failing, triumphing, f***ing up, celebrating and throwing strops. It may be an unrepresentative portrait of disabled people but it is at least a human one. It is not that many decades ago - certainly within my lifetime - that it was rare to see *any* manifestation of disability in public, let alone live on television with a full choice of events under the red button and ifyoumissedanyoftheactionyoucancatchuponBBCiPlayer and now let's join Claire Balding for the swimming.
What I am suggesting - and like you, Paul, I'm not convinced that I'm right - is that overall, I'm inclined to think that the Paralympics are *advancing* the narrative. That narrative isn't anywhere near where you or I or SCOPE or most (all?) of the people reading this blog would like it to be. But it's further along than it was a few years ago: when I look at my sons' school and can see children with additional needs being included educationally and socially (I'm not saying their parents don't have to struggle for that to happen, btw - I know that they do), without it even being an issue or a consideration for their peers - and compare it to what my schools were like (feral, mostly), I can see some progress. Overall I think the Paralympics probably does more good than harm in that regard. But I do see the risks as well.
None of which quasi-sociological waffle helps Maggie. I suppose what I'm saying is: I don't think, overall, the Paralympics is the bad guy here. I can see that it could become a force for bad. I can equally see that it give an opportunity, a lever, to tell a society a bigger story - one that society doesn't want to hear, but needs to. Maybe I'm naive to think that could happen. But I'd like to think there's a chance.
Gavin. Thanks for your comment.
ReplyDeleteOn reflection, I think I should have made clearer that my problem isn't so much with the Paralympics itself but more with the media/society's response to it. Then again, I did state: "I have a problem with the Paralympics. Or, rather, a problem with all the crap we have to hear about it every day."
I can accept that for some disabled people the Paralympics will, as you say, advance the narrative. But, to be honest, those disabled people aren't the ones that concern me - or, rather, concern this post.
One of the key things about Maggie - and disabled people like her - is that she has no voice. Her voice, if you like, is my voice - and she's lucky (or unlucky) that I'm prepared to mouth off for her. But as you know, many disabled people have no-one to speak for them . These are the ones who will always be ignored and neglected. I don’t think the Paralympics will do much for them. Worse, I think it’s entirely possible that the noise around the Paralympics will make it harder for them to be heard. There’s only so much narrative and noise about disability that society can take, that the media is prepared to broadcast. And if they’re going to choose, they’ll always broadcast the shiny, happy, feelgood stories because, apparently, that’s what people want. Of course.
The thing is, I don’t expect anyone to give a fuck about Maggie or people like her (although it’d be nice if they did). And I’m not naive enough to think that what we should all be doing is wallowing in stories about how tough disability is. I think if I were to be totally objective about this – and remove Maggie from the equation – I’d still have a problem with the Paralympics. Simply because it tells a woefully incomplete story about disabled people, about us, about society. In this respect, it’s not that different from the way the BBC tells woefully incomplete stories about us and about society every time it panders to the royal family. I imagine that, like me, most of the country sits at home and doesn’t recognise that kind of story about ourselves: as the BBC has it, we’re all staunch royalists who like nothing better than waving flags and raising toasts to upper-class fuckwits. So – and I’m finally getting to it – I’d imagine that many disabled people will watch the Paralympics, hear all the stories about disability, and not recognise any of it, or very little of it. Do you see what I mean? So yes, it advances a narrative that is loosely to do with disability but it’s a narrative that may have little resonance and relevance to many disabled people. Specifically to those disabled people who have no voice, who live in the margins.
Anyway... I am, after reading your comment, prepared to accept that the Paralympics has contributed to making our society, in general, a bit more open to disability. I get that. And I agree that the Paralympics itself isn’t the bad guy. I don’t begrudge any disabled person taking part in it or seeing it as wholly positive. If it works for them then it works for me. I suppose, as the old saying goes, that the proof will be in the pudding. Only time will tell. And other assorted cliches...
There is a risk that the Paralympics will reinforce the view held by some that disability is simply a matter of not trying hard enough, and that there are deserving and undeserving disabled people. "if they can make me feel good about myself by cheering on someone disabled doing something admirable, triumphing over something i'm not interested in understanding, then I don't begrudge them a bit of disability living allowance". The fact that the welfare reform bill has not triggered riots similar to those against the poll tax makes me worried. Out of sight, out of mind. Thank fuck Maggie has you as a parent as mouthing off is, sadly, essential. emma x (@tractorgirly)
ReplyDeleteI'm closing comments on this post. Not because I'm not up for a debate but because I have other things to do/worry about and I haven't got the time. Thanks to all for the great responses!
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