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 and is reproduced here with permission

Louise. All pictures reproduced with her permission
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How “cli-fi” novels humanise the science of climate change

The paradox is that the harder climate-fiction novels try, the less effective they are.

When the Paris UN Climate Change Conference begins at the end of November, the world’s leaders will review the climate framework agreed in Rio in 1992. For well over 20 years, the world has not just been thinking and talking about climate change, it has also been writing and reading about it, in blogs, newspapers, magazines – and in novels.

Climate change fiction is now a recognisable literary phenomenon replete with its own nickname: “cli-fi”. The term was coined in 2007 by Taiwan-based blogger Dan Bloom. Since then, its use has spread: it was even tweeted by Margaret Atwood in 2013:

It is not a genre in the accepted scholarly sense, since it lacks the plot formulas or stylistic conventions that tend to define genres (such as science fiction or the western). However, it does name a remarkable recent literary and publishing trend.

A 21st-century phenomenon?

Putting a number to this phenomenon depends, partly, on how one defines cli-fi. How much of a novel has to be devoted to climate change before it is considered cli-fi? Should we restrict the term to novels about man-made global warming? (If we don’t, we should remember that narratives about global climatic change are as old as The Epic of Gilgamesh and the Biblical story of the flood.) If we define cli-fi as fictional treatments of climate change caused by human activity in terms of setting, theme or plot – and accept there will be grey areas in the extent of this treatment – a conservative estimate would put the all-time number of cli-fi novels at 150 and growing. This is the figure put forward by Adam Trexler, who has worked with me to survey the development of cli-fi.

This definition also gives us a start date for cli-fi’s history. While planetary climatic change occurs in much 20th-century science fiction, it is only after growing scientific awareness of specifically man-made, carbon-induced climate change in the 1960s and 1970s that novels on this subject emerged. The first is Arthur Herzog’s Heat in 1976, followed by George Turner’s The Sun and the Summer (published in the US as Drowning Towers) in 1987.

At the turn of this century, Maggie Gee and TC Boyle were among the first mainstream authors to publish climate change novels. In this century, we can count Atwood, Michael Crichton, Barbara Kingsolver, Ian McEwan, Kim Stanley Robinson, Ilija Trojanow and Jeanette Winterson as major authors who have written about climate change. The past five years have given us notable examples of cli-fi by emerging authors, such as Steven Amsterdam, Edan Lepucki, Jane Rawson, Nathaniel Rich and Antti Tuomainen.

Creative challenges

Cli-fi is all the more noteworthy considering the creative challenge posed by climate change. First, there is the problem of scale – spatial and temporal. Climate change affects the entire planet and all its species – and concerns the end of this planet as we know it. Novels, by contrast, conventionally concern the actions of individual protagonists and/or, sometimes, small communities.

Added to this is the networked nature of climate change: in physical terms, the climate is a large, complex system whose effects are difficult to model. In socio-cultural terms, solutions require intergovernmental agreement – just what COP21 intends – and various top-down and bottom-up transformations. Finally, there exists the difficulty of translating scientific information, with all its predictive uncertainty, into something both accurate and interesting to the average reader.

Still, cli-fi writers have adopted a range of strategies to engage their readers. Many cli-fi novels could be classified as dystopian, post-apocalyptic or, indeed, both – depicting nightmarish societies triggered by sometimes catastrophic climate events. A future world is one effective way of narrating the planetary condition of climate change.

Some novelists are also careful to underpin their scenarios with rigorous climatic predictions and, in this way, translate science fact into a fictional setting. Kingsolver, who trained as an ecologist, is the best example of this – and Atwood and Robinson are also known for their attempts at making their speculations scientifically plausible. Also, cli-fi novels, particularly those set in the present day or very near future rather than in a dystopian future, tend to show the political or psychological dimensions of living with climate change. Readers can identify with protagonists. To some extent, the global community is represented in fictional everymen or everywomen. Or, often, it is through such characters that science is humanised and its role in combating climate change better understood.

Can cli-fi lead to change?

Could cli-fi affect how we think and act on climate change? The paradox is that the harder cli-fi tries, the less effective it is. Many writers want to inspire change, not insist on it: the line between literature and propaganda is one that most novelists respect. Literature invites us to inhabit other worlds and live other lives. Cli-fi at its best lets us travel to climate-changed worlds, to strive there alongside others and then to return armed with that experience.

In Paris, the UN will seek a global agreement on climate action for the first time in more than 20 years. There is plenty of climate change fiction out there to help provide the mental and psychological space to consider that action.

The Conversation

Adeline Johns-Putra, Reader in English Literature, University of Surrey

This article was originally published on The Conversation. Read the original article.