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A year after the Paralympics, are things now getting worse for disabled people?

While we talk of "legacy", it’s starting to feel like what happened exactly a year ago this month not only hasn’t elevated disabled people, but is being used to trap.

Are you still patronised? I ask Sophie Christiansen, triple Gold medallist at London’s 2012 Paralympics, as we discuss how things are for disabled people in the country a year on. “All the time,” she says. “It’s a minority but yeah, that either talking really condescendingly or patronisingly.”

The last time was a couple of weeks ago, she says, when she gave a talk and in getting out of her wheelchair to move closer to the microphone, an audience member cried out “well done!” “You’ll laugh,” she smiles, “But it was at a [disability] conference.”

The pitying enthusiasm of the ignorant hasn’t noticeably lessened in the past year. The stares don’t go. The desire to avoid, as eyes switch to a nearby body – any nearby body – deemed normal, hasn’t gone either.

I don’t suppose anyone thought it would. Humans are difficult things and difference is terrifying. It takes more than two weeks of patriotism to chip at that.

It takes more than a few sound bites of ‘inspiration’ and desire for ‘change’ too. It requires not taking multiple deep, sweeping policy measures that actively makes things worse. And in doing so securing a sense that certain people – alien, needing, taking – deserve to have things no better. Perhaps that’s the problem. Perhaps, if there are crumbs out there of something close to progress, amidst the rising poverty and separation, it all just looks like regression.

I talk to Dame Anne Begg MP, the first full-time wheelchair user in the House of Commons, about the burst of positivity that came with the Games, and she immediately points to the way disabled people were spoken about. It’s funny how things change.

“The positive thing that came out the Paralympics was the use of language and just being around disabled people,” Anne says. “But the bad thing is that afterwards came a huge amount of negative language used, particularly when it came to benefits. There was a huge contrast.”  

In the end, the Paralympics actually helped build “a false impression of disability”, Anne fears – one where if certain disabled people can do great things, any disabled person can, and judgment of why they’re not soon follows. It’s fed by a Government that has taken to blurring the lines, be it between disability and sickness, or need and laziness.

“The Government equates disability and ill health. The two words are used as if they’re interchangeable, when of course they’re not,” Anne, also Chair of the Work and Pensions Select Committee, says. “A lot of disabled people are able to work. [But then you’ve got] the ‘scrounger’ agenda. It’s created a backlash against disabled people.”

London’s Paralympics was that rare event that’s both symbolic and real, something tangible and brief that contains within it almost an emotion that lasts. It seems predictable that the political class would pull on that, when it suits. The word that triggers a memory of equality and honesty, if we were being cynical, seems the perfect vehicle to mask the spread of inequality and myths.  

Dressed up in the bow of legacy, it’s starting to feel like what happened exactly a year ago this month not only hasn’t elevated disabled people, but is being used to trap.

“Esther McVey, the Minister for Disabled People, gushes at every opportunity that we must all build on the Paralympian legacy. But what does this mean?” Linda Burnip of the campaign group Disabled People Against Cuts, says. If it was about celebrating the rights and opportunities that enabled those Paralympians to shine, that would be one thing, she tells me. “But if it’s about the new corporatism of the welfare state and disability – the removal of equality, rights and opportunities from disabled people – we need to fight it with all our strength. Based on the evidence so far, fighting is our only option.”

‘The “evidence” is everywhere, if you want to see it. Most people, with at least a passing interest, will be aware of the list by now: abolishing Disability Living Allowance, time-limiting Employment and Support Allowance, closing the Independent Living Fund at the national level and slashing social care at the local level… And the ‘bedroom tax’, of course, much like the council tax changes; one of those cuts that doesn’t have disability in the title but happens to disproportionately hit the disabled. As if being disabled and being in poverty were somehow linked.

Disabled people have always been more likely to live in poverty than non-disabled people. More likely to be unemployed, not have an education, or to be isolated. No Government makes that happen, but in all the things they fail to do, they can allow it. Some Government’s, in the things they do, exacerbate it. Over the past year of benefit cuts, this Government’s ensured it.

Money is now being taken from the group that need it most. £28bn, in fact. This is what disadvantaging the disadvantaged looks like.

Anne McGuire, Shadow Minister for Disabled People, talks to me about the cycle this climate is creating: disabled people’s fear of “the cliff edge” of losing benefits, the negative media coverage that defines them as purely benefit recipients, the linking of disability as scroungers, and in turn the fear and reality “of harassment as a result” of such a focus.

“Over the past year, I’ve lost count of the number of disabled people who have told me that they feel as though they’ve gone back twenty years in terms of their quality of life,” she says.

You don’t need to have expected two weeks of sport to make things better for disabled people to feel the ache that in many ways, one year on, things are worse.

2013 has taught us that, contrary to popular belief, you can in fact put a price on dignity. It’s around how much it costs for a local authority to hire a PA to help someone to the toilet if they can’t get there themselves. Funding cuts mean these are calculations that are actually currently being made in this country.

I spoke to one disabled woman, who needs help with all aspects of daily living, who has just had her care package ‘re-assessed’ by Northampton council. She’s been told cuts mean she’ll have her support reduced by over 50 hours a week.

“I’ll be left isolated, housebound, at risk of malnutrition, and unsafe in my own home,” she tells me, under anonymity. “I’ll also be forced to wear incontinence pads at night instead of getting an on-call PA to help to go to the toilet.”

Under the proposed plans, she’s expected to manage on a care plan of three hours a day. That’s one hour to get up, half hour for lunch, half hour for dinner, and one hour for bed. She’ll get 9 hours ‘social hours’ a week, or more accurately, 9 hours to leave the house.  

Perhaps it seems quite normal for a disabled person to be shut in their home. Perhaps the action the Government has taken this year simply plays into the way enough people, and the structures they live within, think things should be. 

The big things join with the small things, after all, and the small things have always said ‘don’t ask for too much’. The step up to the restaurant, the dirty look, the public transport that it’s decided can run whilst excluding one part of the public… Or – as Tanni Grey-Thompson found on a train yet again last month – decides it can tell a certain sort of person it doesn’t need to provide a toilet. Taken apart, there is something telling about being used to watching your fluid intake when out because you know you live in a country where public places don’t have to meet your basic human needs.

“We don’t expect better service [than other people] and we all understand that it isn’t perfect,” Tanni tells me. “But we shouldn’t be treated like second class citizens.”  

“It can be the little things that wear you down,” she says. “How you get treated is so variable. It’s down to the person, not always the system (in the case of trains) and that’s what makes it so hard to sort out… you don’t always know what you’re fighting.”

If she was given the choice to change one thing between welfare cuts and the smaller things, Tanni isn’t sure what it would be. “Probably the low level discrimination,” she says. “I think this has a wider and continuing impact on the rest.”

It isn’t one thing that makes a person feel as if they’re a second class citizen in their own country. It isn’t one thing that makes them feel like they’ve gone back twenty years. The small things join with the big things, and for certain people, they’ve always made life a certain way. At this point, as that way of life for many is worsening still, two weeks last summer are starting to feel like a cruel tease. 

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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Just face it, being a parent will never be cool

Traditional parenting terms are being rejected in favour of trendier versions, but it doesn't change the grunt-like nature of the work.

My children call me various things. Mummy. Mum. Poo-Head. One thing they have never called me is mama. This is only to be expected, for I am not cool.

Last year Elisa Strauss reported on the rise of white, middle-class mothers in the US using the term “mama” as “an identity marker, a phrase of distinction, and a way to label the self and designate the group.” Mamas aren’t like mummies or mums (or indeed poo-heads). They’re hip. They’re modern. They’re out there “widen[ing] the horizons of ‘mother,’ without giving up on a mother identity altogether.” And now it’s the turn of the dads.

According to the Daily Beast, the hipster fathers of Brooklyn are asking their children to refer to them as papa. According to one of those interviewed, Justin Underwood, the word “dad” is simply too “bland and drab”:

“There’s no excitement to it, and I feel like the word papa nowadays has so many meanings. We live in an age when fathers are more in touch with their feminine sides and are all right with playing dress-up and putting on makeup with their daughters.”

Underwood describes “dad” as antiquated, whereas “papa” is an “open-minded, liberal term, like dad with a twist” (but evidently not a twist so far that one might consider putting on makeup with one’s sons).

Each to their own, I suppose. Personally I always associate the word “papa” with “Smurf” or “Lazarou.” It does not sound particularly hip to me. Similarly “mama” is a word I cannot hear without thinking of “Bohemian Rhapsody”, hence never without a follow-up “ooo-oo-oo-ooh!” Then again, as a mummy I probably have no idea what I am talking about. If other people think these words are trendy, no doubt they are.

Nonetheless, I am dubious about the potential of such words to transform parenting relationships and identities. In 1975’s Of Woman Born, Adrienne Rich describes how she used to look at her own mother and think “I too shall marry, have children – but not like her. I shall find a way of doing it all differently.” It is, I think, a common sentiment. Rejecting mummy or daddy as an identity, if not as an individual, can feel much the same as rejecting the politics that surrounds gender and parenting. The papas interviewed by The Daily Beast are self-styled feminists, whose hands-on parenting style they wish to differentiate from that of their own fathers. But does a change of title really do that? And even if it does, isn’t this a rather individualistic approach to social change?

There is a part of me that can’t help wondering whether the growing popularity of mama and papa amongst privileged social groups reflects a current preference for changing titles rather than social realities, especially as far as gendered labour is concerned. When I’m changing a nappy, it doesn’t matter at all whether I’m known as Mummy, Mama or God Almighty. I’m still up to my elbows in shit (yes, my baby son is that prolific).

The desire to be known as Papa or Mama lays bare the delusions of new parents. It doesn’t even matter if these titles are cool now. They won’t be soon enough because they’ll be associated with people who do parenting. Because like it or not, parenting is not an identity. It is not something you are, but a position you occupy and a job you do.

I once considered not being called mummy. My partner and I did, briefly, look at the “just get your children to call you by your actual name” approach. On paper it seemed to make sense. If to my sons I am Victoria rather than mummy, then surely they’ll see me as an individual, right? Ha. In practice it felt cold, as though I was trying to set some kind of arbitrary distance between us. And perhaps, as far as my sons are concerned, I shouldn’t be just another person. It is my fault they came into this vale of tears. I owe them, if not anyone else, some degree of non-personhood, a willingness to do things for them that I would not do for others. What I am to them – mummy, mum, mama, whatever one calls it – is not a thing that can be rebranded. It will never be cool because the grunt work of caring never is.

It is not that I do not think we need to change the way in which we parent, but this cannot be achieved by hipster trendsetting alone. Changing how we parent involves changing our most fundamental assumptions about what care work is and how we value the people who do it. And this is change that needs to include all people, even those who go by the old-fashioned titles of mum and dad.

Ultimately, any attempt to remarket parenting as a cool identity smacks of that desperate craving for reinvention that having children instils in a person. The moment you have children you have bumped yourself up the generational ladder. You are no longer the end of your family line. You are – god forbid – at risk of turning into your own parents, the ones who fuck you up, no matter what they do. But you, too, will fuck them up, regardless of whether you do it under the name of daddy, dad or papa. Accept it. Move on (also, you are mortal. Get over it).

Parenting will never be cool. Indeed, humanity will never be cool. We’re all going to get older, more decrepit, closer to death. This is true regardless of whether you do or don’t have kids – but if you do you will always have younger people on hand to remind you of this miserable fact.

Your children might, if you are lucky, grow to respect you, but as far as they are concerned you are the past.  No amount of rebranding is going to solve that. This doesn’t mean we can’t change the way we parent. But as with so much else where gender is concerned, it’s a matter for boring old deeds, not fashionable words.

 

 

 

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