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
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Expressions of sympathy for terror's victims may seem banal, but it's better than the alternative

Angry calls for "something to be done" play into terrorists' hands.

No sooner had we heard of the dreadful Manchester Arena bombing and before either the identity of the bomber or the number of dead were known, cries of “something must be done” echoed across social media and the airwaves. Katie Hopkins, the Mail Online columnist, called for “a final solution”, a tweet that was rapidly deleted, presumably after she remembered (or somebody explained to her) its connotations. The Telegraph columnist Allison Pearson wanted “a State of Emergency as France has” and “internment of thousands of terror suspects”, apparently unaware that the Nice attack, killing 86, happened after that emergency was declared and that nobody has been interned anyway.

It cannot be said too often that such responses play into terrorists’ hands, particularly if Isis was behind the Manchester bombing. The group’s aim is to convince Muslims in the West that they and their families cannot live in peace with the in-fidel and will be safe only if they join the group in establishing a caliphate. Journalists, striving for effect, often want to go beyond ­banal expressions of sympathy for ­victims. (It’s a mistake I, too, have sometimes made.) But occasionally the banal is the appropriate response.

Pity begins at home

Mark Twain, writing about the “terror” that followed the French Revolution and brought “the horror of swift death”, observed that there was another, older and more widespread, terror that brought “lifelong death from hunger, cold, insult, cruelty and heartbreak”. The first, he wrote, we had been “diligently taught to shiver and mourn over”; the other we had never learned to see “in its vastness or pity as it deserves”.

That is true: more children across the world die each day from hunger or disease than could ever be killed in a terror attack. We should not forget them. Nor should we forget that the numbers killed in terrorist attacks in, for example, Baghdad far outnumber those killed in all European attacks of our times combined. In an age of globalisation, we should be more cosmopolitan in our sympathies but the immediacy of 24-hour news make us less so.

When all is said and done, however, pity, like charity, begins at home. We naturally grieve most over those with whom we share a country and a way of life. Most of us have been to concerts and some readers will have been to one at the Manchester Arena. We or our children could have been present.

Cheers from Highgate Cemetery

What a shame that Theresa May modified the Tory manifesto’s proposals on social care. For a few giddy days, she was proposing the most steeply progressive (or confiscatory, as the Tories would normally say) tax in history. True, it was only for those unfortunate enough to suffer conditions such as dementia, but the principle is what counts. It would have started at zero for those with assets of less than £100,000, 20 per cent for those with £120,000, 50 per cent for those worth £200,000, 99 per cent with those with £10m and so on, ad infinitum. Karl Marx would have been cheering from Highgate Cemetery.

Given that most people’s main asset – the value of their home – did not have to be sold to meet their care costs until death, this was in effect an inheritance tax. It had tantalising implications: to secure their inheritance, children of the rich would have had to care for their parents, possibly sacrificing careers and risking downward mobility, while the children of the poor could have dedicated themselves to seeking upward mobility.

The Tories historically favour, in John Major’s words, wealth cascading down the generations. In recent years they have all but abolished inheritance tax. Now they have unwittingly (or perhaps wittingly, who knows?) conceded that what they previously branded a “death tax” has some legitimacy. Labour, which proposes a National Care Service but optimistically expects “cross-party consensus” on how to finance it, should now offer the clarity about old age that many voters crave. Inheritance tax should be earmarked for the care service, which would be free at the point of use, and it should be levied on all estates worth (say) £100,000 at progressive rates (not rising above even 50 per cent, never mind 99 per cent) that yield sufficient money to fund it adequately.

Paul Dacre’s new darling

Paul Dacre, the Daily Mail editor, is in love again. “At last, a PM not afraid to be honest with you,” proclaimed the paper’s front page on Theresa May’s manifesto. Though the Mail has previously argued that to make old people use housing wealth to fund care is comparable to the slaughter of the first-born, an editorial said that her honesty was exemplified by the social care proposals.

On the morning of the very day that May U-turned, the Mail columnist Dominic Lawson offered a convoluted defence of the failure to cap what people might pay. Next day, with a cap announced, the Mail hailed “a PM who’s listening”.

Dacre was previously in love with Gordon Brown, though not to the extent of recommending a vote for him. What do Brown and May have in common? Patriotism, moral values, awkward social manners, lack of metropolitan glitz and, perhaps above all, no evident sense of humour. Those are the qualities that win Paul Dacre’s heart.

Sobering up

Much excitement in the Wilby household about opinion polls that show Labour reducing the Tories’ enormous lead to, according to YouGov, “only” 9 percentage points. I find myself babbling about ­“Labour’s lead”. “What are you talking about?” my wife asks. When I come to my senses, I realise that my pleasure at the prospect, after seven years of Tory austerity, of limiting the Tories’ majority to 46 – more than Margaret Thatcher got in 1979 – is a measure of my sadly diminished expectations. l

Peter Wilby was editor of the Independent on Sunday from 1995 to 1996 and of the New Statesman from 1998 to 2005. He writes the weekly First Thoughts column for the NS.

This article first appeared in the 25 May 2017 issue of the New Statesman, Why Islamic State targets Britain

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