Sunday, 19 May 2013

The Impossible Girl (spoilers) #DoctorWho #Spoonie

Last night was the season finale of Doctor Who. I  thought it was one of the best episodes for quite some time, certainly the best of the season. But it also got me to thinking. A major theme was losing and gaining control - both for the Doctor and his current companion, Clara. And that's also a huge issue for spoonies, people with long-term illnesses that cause crippling fatigue.

The baddies in this episode were the Whispermen, who kidnap the Doctor's friends Clara, Vastra, Jenny and Strax to lure him to the one place he must never go: his grave, on the planet Trenzalore.

When we become ill, it's as if we've been kidnapped and taken to a different planet. We are snatched away from our everyday lives, held hostage by the limitations of our conditions.

There is no body in the Doctor's tomb. Instead there is a time tunnel, made of scar tissue from all the Doctor's travels through time and space. The villain of the piece, the Great Intelligence (hammed up wonderfully by Richard E. Grant) enters the time tunnel, aiming to split itself into fragments scattered throughout the Doctor's timeline and corrupt it absolutely, undoing all the good he's done.

Clara follows it into the time tunnel in an attempt to reverse the damage. Things take place around her. Previous incarnations of the Doctor run by. At first she feels out of control. She has no idea what's going on.

Gradually she works out her purpose. The Doctor is always there, though not always in the same form. She can recognise the best thing for the Doctor to do: she saves his life.

It's the same for us. At first, everything is confusion and feeling out of control. Fatigue, pain, brain fog. But gradually, a pattern emerges. We work out what to do. How to live our lives in the best possible way for ourselves and those around us. Maybe we're not saving the Doctor (or maybe you are?) but in our own way we're time lords, pacing and resting so we can do the things we really want to do.

We're the impossible girls and boys. We learn our purpose. We regain control over our lives.

We're spoonies.

Wednesday, 1 May 2013

#BADD Growing Up Beside You

This is Imperial Place, Borehamwood.

A few days ago, someone asked me for directions to get there. I gave the directions. Off he trotted. I assume he got there - I have no reason to think he didn't.

OK, I hear you say. But why am I telling you this little anecdote?

Well, he asked me. There were other people around, but he asked me - the woman in the wheelchair. Unless you use a wheelchair yourself, you have no idea how rare this is.

You're much more likely to find someone looking at you like you're a bit weird because you're laughing, or standing up, or walking a few steps (YOU FRAUD!), or smoking a cigarette, or getting things off the top shelf in the supermarket, or clothes shopping, or drinking alcohol.

I mean, how dare I have anything approaching a normal life? I'm a cripple! It's surprising enough to see me out on my own without a minder, never mind doing things that everyone else - regular people, whose legs and stuff work - does.

Why does this happen? There has been a tradition of "Othering" disabled people, setting up an "us and them" dichotomy. Once disabled people are established as "them", they are seen as one homogenous mass. At the very most, they are split into "wheelchair users", "blind people", "deaf people" and so on. Within each sub-group, there is no scope for variation. So, for instance, a punk rocker using a wheelchair is far more shocking than an able-bodied punk rocker would be.

Other wheelchair users like myself may have experienced the shock it causes when they stand up, or walk a few paces. The standard definition of the subgroup "wheelchair user" is "totally unable to walk", and many members of the general population with no experience of disability are completely thrown by any standing or walking ability.

Similarly, use of a wheelchair is associated in many people's minds with learning difficulties. I have had an assistant in Clinton's Cards telling me how to use a book of stamps. (I told her I was doing a PhD and I thought I would cope.)

What can be done to counter this Othering? More and more exposure to more and more disabled people, showing our variety and the realities of our different lives, and how close they are in so many ways to the lives of everyone else in the world. Yes, that needs a more accessible society and a decent welfare system, so we're maybe talking long-term. But there are some good guys out there already. Think back to my Imperial Place experience.

Each individual like that who "gets it" is one more person who can spread the word that disabled people are - in the end - just people. It's best when it starts in childhood. So what we need to do is for you to grow up beside me, and I'll grow up beside you. Paolo Nutini says it well, I think.

This is my post for Blogging Against Disablism Day 2013. You can find the other links on Goldfish's great blog (which I recommend in general!) here.