Do the Paralympics put extra pressure on disabled people?

Philippa Willitts and Frances Ryan debate whether being told to be an inspiration is any easier than being called a villain.

Philippa Willitts: As someone who is normally indifferent, at best, towards sport, I was surprised by how engaging and entertaining I found the Olympic Games. There was something about the best athletes in the world doing incredible things with their bodies that was simply captivating. As a result, I am now looking forward to the Paralympic Games, to continue to see elite sports people performing seemingly superhuman feats.

However, I do fear that the commentary, while helpful to listen to during the Olympic Games, will instead be a source of frustration and annoyance during the Paralympics. The narrative which often underpins disability sport is one of "inspiration" but not for the athletes' sporting achievements. Instead, they are praised for managing and coping with their impairments, something which they have little choice in doing.

Oscar Pistorius was the first amputee to ever participate in the Olympic Games, and the commentary which accompanied footage of him was centred, at times, around the circumstances of his impairment. I did not hear about the childhoods of any of his fellow sprinters but for Pistorius it was an inevitable feature. Will we hear details of the "tragedies" which befell every Paralympian who takes part in the games, do you think?

Frances Ryan: I think there’s often a craving for "tragedy" – it’s human nature, and certainly the nature of the media. The Paralympics can’t help but feed it. Set on a world stage, we get the disabled, on mass, triumphing over adversity. To broadcasters, this isn’t just a sporting event. It’s a movie. Oscar Pistorius is this year’s star. But like in any good movie, the stars have to play the role the audience wants to see. The tagline to Channel Four’s (otherwise incredible) Paralympic advert says it all: they are the "superhumans".

Perhaps now more than ever, this feels worryingly like playing to society’s need to portray the disabled in ways that makes everyone else comfortable. To categorise them; whether it’s negatively as a "scrounger" or positively as an "inspiration". One isn’t better than the other for me. I want disabled people to be viewed as "heroes" no more than I want them to be viewed as "villains". Equality comes when you’re just people. Not special, not worse, but like everyone else.

The Paralympics has always seemed confused on this point. Is it disability pride to see disability not ignored, but focused on? I’m not convinced it’s empowering to be viewed as an inspiration, or inclusion to, rather than be part of the Olympics, be separated.

PW: I agree: the "inspiration" narrative isn’t much better than the "scrounger" one. Both place us in a position of being "other" which then keeps us separate and different.

It is refreshing, whenever the Paralympics comes along, to see lots of different disabled people represented on mainstream TV, and not as a one-off in a soap or the butt of jokes in a comedy show. It can be helpful, particularly for disabled children, or newly-disabled adults, to see people "like themselves", but it may also create unrealistic expectations, or feel alienating. If you are an amputee with no interest in pushing your physical limits and the only time you see other amputees is when they are doing amazing feats of strength or endurance, the shared impairment is no guarantee of a sense of recognition between the two.

Because non-disabled people can have such a reductive view of what disability is, the Paralympics could even create a strange expectation for all disabled people to become international athletes. This pressure is already even coming from Paralympians themselves. Athlete Jerome Singleton told the Guardian:

“We all know somebody with a disability and now we can point to the Games and ask them: 'Why aren't you seeking to become a Paralympian?'”.

It has been in the news recently that disability hate crime is at an all time high, it will be interesting to see if the Paralympics, and the way they are reported and commented upon, affects the public’s view of disabled people.

FR: Asking a disabled person why they aren’t trying to be a Paralympian is as much use as asking every woman why she isn’t trying to be Jessica Ennis. It will also generally get you the same answer: I don’t want to and/or I can’t. Unfortunately, in the case of the disabled, it’s an answer that (somewhat bizarrely) risks being held against them. There’s a growing need to prove yourself as a disabled person, whether that’s being weak enough to really be disabled or putting enough effort in to not be. Britain has become a paradox that simultaneously wants its disabled ‘needy’ to deserve benefits and ‘super able’ to deserve respect.
The person in all of this gets lost – and once we de-humanize, hatred is always going to come next. That’s what hate crime is, really. A hatred of something that you are, deemed to define a person to such a degree that they are simply that thing.

It results in murder. It results in even a Paralympian like Tanni Grey Thompson speaking of how she had to crawl off a train and being greeted, not with empathy by the public, but abuse. We can trace it to fear, we can call it ignorance, but I’m still left asking how this is happening.

PW: I think there has been an increasing narrative, from the government and certain parts of the media, which demonises disabled people. There has been so much talk of benefit cheats and abuses of the system that people who don’t know any better have started to believe that that is the sole defining feature of disabled people, despite the statistics not backing that up (0.5% of DLA claims are fraudulent, according to the government’s own figures).

I fear Paralympians will be held up as examples of disabled people being able to achieve superb results because they put their minds to it, further fuelling attitudes that all disabled people should at least be able to work, thus increasing criticism of those who can’t. Many people won’t realise that a significant number of the British Paralympic team will be recipients of Disabled Living Allowance (DLA) themselves, so any perceived disconnect between Paralympians and benefit claimants will be an inaccurate one.

FR: Many people don’t even realise what DLA is. It shows the ignorance we’re working with when claiming a benefit that has nothing to do with unemployment – and in fact helps disabled people stay in work – leads to abuse of “get a job!”  

The country’s biggest selling national newspaper proudly runs a "Blitz the Fiddler" campaign. The Work and Pensions Secretary calls a system where 0.5 per cent of claimants are not genuine “riddled with abuse and fraud”. We’re in a climate of ignorance, fed by scare-mongering and lies propagated by those in positions of power. Running alongside an unequal, failing economic system that breeds fear, need, and self-protection, it is potent.

For all the concern that the Paralympics could exacerbate this, there has to be hope there too. Perceptions of disability can only improve when the masses get their images, not by reading headlines, but by seeing disabled people. It has to go beyond the sporting arena, to public services, the media, and Parliament.

Disabled people need to start being viewed as people. Only then can empathy and understanding start. A society that feels, not fear, but a responsibility towards its own members? That will be "superhuman".

Frances Ryan is a freelance writer, writing predominantly on disability, feminism, and LGBT rights. She is currently completing a doctorate on equality of opportunity. She tweets as @frances__ryan and blogs here. Philippa Willitts is a freelance writer and proofreader. She tweets as @philippawrites and her website is here.

 

Team GB's David Weir competes in the Paralympics test event earlier this year. Photograph: Getty Images
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We argue over Charlie Gard, but forget those spending whole lives caring for a disabled child

The everyday misery of care work is hidden behind abstract arguments over life and death.

“Sometimes,” says the mother, “I wish we’d let him go. Or that he’d just been allowed to slip away.” The father agrees, sometimes. So too does the child, who is not a child any more.

On good days, nobody thinks this way, but not all days are good. There have been bright spots during the course of the past four decades, occasional moments of real hope, but now everyone is tired, everyone is old and the mundane work of loving takes a ferocious toll.

When we talk about caring for sick children, we usually mean minors. It’s easiest that way. That for some parents, the exhaustion and intensity of those first days with a newborn never, ever ends – that you can be in your fifties, sixties, seventies, caring for a child in their twenties, thirties, forties – is not something the rest of us want to think about.

It’s hard to romanticise devotion strung out over that many hopeless, sleepless nights. Better to imagine the tragic mother holding on to the infant who still fits in her loving arms, not the son who’s now twice her size, himself edging towards middle-age and the cliff edge that comes when mummy’s no longer around.

Writing on the tragic case of Charlie Gard, the Guardian’s Giles Fraser claims that he would “rain fire on the whole world to hold my child for a day longer”. The Gard case, he argues, has “set the cool rational compassion of judicial judgement and clinical expertise against the passion of parental love”: “Which is why those who have never smelled the specific perfume of Charlie’s neck, those who have never held him tight or wept and prayed over his welfare, are deemed better placed to determine how he is to live and die.”

This may be true. It may also be true that right now, countless parents who have smelled their own child’s specific perfume, held them tightly, wept for them, loved them beyond all measure, are wishing only for that child’s suffering to end. What of their love? What of their reluctance to set the world aflame for one day more? And what of their need for a life of their own, away from the fantasies of those who’ll passionately defend a parent’s right to keep their child alive but won’t be there at 5am, night after night, cleaning out feeding tubes and mopping up shit?

Parental – in particular, maternal – devotion is seen as an endlessly renewable resource. A real parent never gets tired of loving. A real parent never wonders whether actually, all things considered, it might have caused less suffering for a child never to have been born at all. Such thoughts are impermissible, not least because they’re dangerous. Everyone’s life matters. Nonetheless, there are parents who have these thoughts, not because they don’t love their children, but because they do.

Reporting on the Gard case reminds me of the sanitised image we have of what constitutes the life of a parent of a sick child. It’s impossible not to feel enormous compassion for Charlie’s parents. As the mother of a toddler, I know that in a similar situation I’d have been torn apart. It’s not difficult to look at photos of Charlie and imagine one’s own child in his place. All babies are small and helpless; all babies cry out to be held.

But attitudes change as children get older. In the case of my own family, I noticed a real dropping away of support for my parents and disabled brother as the latter moved into adulthood. There were people who briefly picked him up as a kind of project and then, upon realising that there would be no schmaltzy ending to the story, dropped him again. Love and compassion don’t conquer all, patience runs out and dignity is clearly best respected from a distance.

All too often, the everyday misery of care work is hidden behind abstract arguments over who gets the right to decide whether an individual lives or dies. I don’t know any parents who truly want that right. Not only would it be morally untenable, it’s also a misrepresentation of what their struggles really are and mean.

What many parents who remain lifelong carers need is adequate respite support, a space in which to talk honestly, and the recognition that actually, sometimes loving is a grim and hopeless pursuit. Those who romanticise parental love – who, like Fraser, wallow in heroic portrayals of “battling, devoted parents” – do nothing to alleviate the suffering of those whose love mingles with resentment, exhaustion and sheer loneliness.

There are parents out there who, just occasionally, would be willing to set the world on fire to have a day’s respite from loving. But regardless of whether your child lives or dies, love never ends. 

Glosswitch is a feminist mother of three who works in publishing.