Being me: what it really means to be disabled

Louise Page, who has had four amputations, explains how her disability hasn't changed her essential feeling of who she is.

It wasn’t until I started having bits of me cut off, that I truly understood what it meant to be a disabled person.

I remember one day, after one of my four amputations, that I said to my Dad, “you know, they can keep cutting bits of me away, but I’ll still be me”. And he instantly started to cry. That wasn’t my intention, to make my dad cry. But I think it was then that I genuinely understood physical disability.

When you first have an amputation, you have to wait eight weeks for the wound to heal and the swelling to go down before you can be fitted with a prosthetic. And then of course, you need to learn to walk with it. And at first, you can’t wear it all the time as your body needs to adjust to weight bearing on something that wasn’t designed for bearing the weight of your full body (ie a cut off tibia or femur). So of course there are lots of times you have to go out in public with crutches and a missing leg.

And that means people staring, some people do a double-take, some people try to look very subtly by just looking sideways, some properly stare for a while, I even once had a lady tap her friend on the shoulder and point at me. My approach has always been to ignore the staring. My mum told me I should give everyone who looks a big smile, but maybe I’m not as nice as she is! I just tell myself that I would do the same thing. If we see someone who looks different in any way – excessively thin or fat, or with crazily dyed hair or bad style (one I know I have to confess to… see, I am mean!), then we can’t help staring. It’s just human nature.  So I’ve decided I can handle it, though to be honest I wish it wouldn’t happen…

The picture above is me during my second year of chemo just after first amputation, Summer 2008

Anyway, the point I was making was that I’m still the same Louise. Weirdly people treat you as a hero or as someone who is especially brave, when you have cancer and/or a disability, especially one that makes dramatic visible changes to your body. And we all seem to think cancer patients will discover the true meaning of what’s important in life. And yes, I have (though I hope I knew that beforehand already). But we also don’t stop being ourselves. I carried on with my Vogue subscription and my addiction to shoes (yes shoes! An amputee who loves shoes… how crazy is that?!) and of course… the handbags (some of you will be breathing a knowing sigh…). But I also carried on being Louise. Wanting to see friends, get dressed up to go out for dinner, read books, go to the theatre, watch trashy TV…

So my disability didn’t change me at all, apart from making walking, carrying things, getting dressed, dancing, walking on a beach, balancing on a bus, dancing, sitting (I could go on forever but I won’t) a hell of a lot harder. I’ve always been me throughout.  And I’ve always tried really hard to make sure everyone around me sees and knows that.

And of course every one of us is different and wants different things from life, so I can only speak for myself. And I think that’s why Diana (my boss at Thistle) values me – because I understand. I just hope after reading this, more people will understand this now too. I may have a disability, but I don’t consider myself disabled (the parking badge comes in very handy though!).  I’m just Louise and no matter what has happened or is yet to happen, I always will be.

This blog was first published on alancainsley.wordpress.com and is reproduced here with permission

Louise. All pictures reproduced with her permission
Carl Court/Getty Images
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The idea that sitting all day behind a desk increases your output is a fantasy

If you don’t trust people, at least make sure that you imprison them, seems to be the idea.

Scruffy and tieless, I was the odd one out. Taking a break from research in the London Library, I settled at the bar of an Italian restaurant and resumed reading Tony Collins’s excellent book Sport in Capitalist Society. While the hedge-fund managers looked askance, the young Hungarian waiter recognised one of his own. “That was the subject of my PhD,” he explained, before giving me a sparkling history of sport and Hungarian society.

He now juggles waiting tables with writing articles. It’s not easy. He tells me that when he rereads his old academic work, “Sometimes I need a dictionary!” Like many other people in today’s economy, he balances different jobs, the remuneration and fulfilment varying significantly.

As you have probably noticed, it seems that almost everyone is employed but hardly anyone has a job. Of the 42 million people of working age in Britain, 23 million are in a full-time job; roughly 14 million are full-time parents or carers; most of the rest work part-time, or are self-employed, or work for a business that is so small that it is, in effect, a form of self-employment. The “job” – the salary, the subsidised canteen, the pension – is on the wrong side of history. That is both liberating and scary.

There are two separate points here. The first, deriving from the privilege of choice, is that some people (I am one of them) are happier with the variety and freedom of self-employment. The second is that many people do not have a choice: solid, dependable jobs are a dead concept. We had better get used to fending for ourselves, because we are going to have to.

The phrase “portfolio career” was popularised by the management thinker Charles Handy. “I told my children that they would be well advised to look for customers, not bosses,” as Handy put it. “The important difference is that the price tag now goes on people’s produce, not their time.”

This transition from time-serving to genuine contribution can be good news for workers and employers alike. The art of being an employee is to string things out while pretending to be busy. The art of being self-employed is the opposite: getting things done well and efficiently, while being open to taking on new work. Employees gain an incentive to look effortful, the self-employed to look effortless.

The idea that sitting constantly behind a desk increases output, which underpins the old concept of a job, is a fantasy derived from control: if you don’t trust people, at least make sure that you imprison them. As an unfortunate consequence, the projection of phoney “busyness” consumes more energy than actual work and brings a kind of compound stress: always bustling around, never moving forward. “Never walk past the editor’s office without carrying a piece of paper,” young journalists are advised.

When I turned pro as a cricketer, an old hand told me that if I ever felt lost at practice, I should untie my shoelaces and then do them up again. “We don’t measure success by results but by activity,” as Sir Humphrey quips in Yes Minister. Ironically, I had never realised that my career as a sportsman – apparently playful and unserious – would prove to be the outlier for opposite reasons. Where most careers have drifted towards freelance portfolios, professional sport has tightened the leash. When you have to eat, sleep and train according to strict rules, your job is at one extreme end of the control-of-freedom spectrum. Yet even in elite sport there is more room for semi-professionalism than the system usually allows, especially in games – such as cricket – where physical fitness is necessary but not sufficient.

Yet the reality of the portfolio career inevitably brings new problems that are bound up with wider forces. A life that is spent moving from one institution to another – from school, to university, to a lifelong job – is becoming exotic, rather than the norm. For most of us, there will be no retirement party, no carriage clock. It is not just finding income that is being devolved downwards; so, too, is the search for meaning, purpose and identity. We live in what Handy calls a “de-institutionalised society”.

There are civilising aspects to the trend. First, the new employment landscape reduces the likelihood of people wasting their lives in the wrong job just because it is safe. Handy cites data suggesting that 80 per cent of employees feel dissatisfied in corporate jobs while 80 per cent are happy leading freelance lives. Nor does the old lie – that of backloading happiness, with corporate sacrifice giving way to happy retirement – stack up. We are better off balancing duties and pleasures all the way through.

Second, the decline of the job-for-life may gradually undermine the assumption that everyone’s wealth and prospects (let alone their value) can be determined by a couple of questions about an employer’s address. Social assumptions based on (apparent) occupation are increasingly ridiculous. Guess who the scholar is in the Italian restaurant: the waiter. It’s a good lesson. Your Uber driver could be a landscape architect, funding his professional passion with part-time top-ups.

The language of employment (“Where do you work?”) has been slow to catch up with this reality. When asked, “What do you do?” a freelancer can give a full and interesting answer, only to prompt the follow-up question, “So, what do you do, then?” If conversation becomes less like a mortgage questionnaire, that can only be a good thing.

Hugo Rifkind, writing recently in the Times, admired the Scandinavian-inspired decoupling of taste from wealth. “It is a ­better world . . . where you are not judged on the lineage of your sideboard.” I am more radical. It is a better world when you are not judged on your job.

Better or not – and like it or not – we will have to get used to it. 

Ed Smith is a journalist and author, most recently of Luck. He is a former professional cricketer and played for both Middlesex and England.

This article first appeared in the 05 February 2015 issue of the New Statesman, Putin's war