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
#Match4Lara
Show Hide image

#Match4Lara: Lara has found her match, but the search for mixed-race donors isn't over

A UK blood cancer charity has seen an "unprecedented spike" in donors from mixed race and ethnic minority backgrounds since the campaign started. 

Lara Casalotti, the 24-year-old known round the world for her family's race to find her a stem cell donor, has found her match. As long as all goes ahead as planned, she will undergo a transplant in March.

Casalotti was diagnosed with acute myeloid leukaemia in December, and doctors predicted that she would need a stem cell transplant by April. As I wrote a few weeks ago, her Thai-Italian heritage was a stumbling block, both thanks to biology (successful donors tend to fit your racial profile), and the fact that mixed-race people only make up around 3 per cent of international stem cell registries. The number of non-mixed minorities is also relatively low. 

That's why Casalotti's family launched a high profile campaign in the US, Thailand, Italy and the US to encourage more people - especially those from mixed or minority backgrounds - to register. It worked: the family estimates that upwards of 20,000 people have signed up through the campaign in less than a month.

Anthony Nolan, the blood cancer charity, also reported an "unprecedented spike" of donors from black, Asian, ethcnic minority or mixed race backgrounds. At certain points in the campaign over half of those signing up were from these groups, the highest proportion ever seen by the charity. 

Interestingly, it's not particularly likely that the campaign found Casalotti her match. Patient confidentiality regulations protect the nationality and identity of the donor, but Emily Rosselli from Anthony Nolan tells me that most patients don't find their donors through individual campaigns: 

 It’s usually unlikely that an individual finds their own match through their own campaign purely because there are tens of thousands of tissue types out there and hundreds of people around the world joining donor registers every day (which currently stand at 26 million).

Though we can't know for sure, it's more likely that Casalotti's campaign will help scores of people from these backgrounds in future, as it has (and may continue to) increased donations from much-needed groups. To that end, the Match4Lara campaign is continuing: the family has said that drives and events over the next few weeks will go ahead. 

You can sign up to the registry in your country via the Match4Lara website here.

Barbara Speed is a technology and digital culture writer at the New Statesman and a staff writer at CityMetric.