It's a big day today. Left Foot Forward have invited myself and Sue Marsh to be part of their seminar panel at the Compass Conference 2011 - Building The Good Society.
Being spoonies....our plans haven't exactly gone to plan so far...
As of yesterday we still didn't know if Sue was going to be well enough to travel, let alone string a coherent sentence together on Saturday morning. Crohn's + virus + chest infection + antibiotics + steroids = Sad Suey. This presented us with a slight problem, whilst either Sue or I can cover the subject as a whole if necessary Sue was also appointed chief wheelchair pusher. If she wasn't able to make it to London I was in trouble...especially when it occurred to me that alone I don't have enough mobility to make it in and out of the hotel. Fortunately Sue is well enough to make the journey, just in time for my ability to travel to be in doubt.
At six thirty this morning I gave up on the idea of sleep altogether and started to vomit up the medications I'd spent all night throwing down me in the hope they'd induce sleep. By 7.30 Sue and I were on the phone doing our 'oh god' routine. It's never a good sign when all you can say is 'oh god' and 'huh?' particularly when those are interspersed with puking breaks.
The thing is...we've been really sensible me and Sue. We've known this date was coming for weeks, we've planned to travel the day before, spent the whole week resting in preparation and employed our specialist disabled organisation skills to the max to ensure everything runs smoothly. Whilst we might be able to control bookings, what we want to say and how to say it, the one thing we simply cannot control however hard we try is our own bodies.
And this is really what 'fit for work' with a fluctuating chronic condition means. I might stop vomiting in another half an hour or so and be tired but fit to travel. I hope so, I usually do. But on the other hand I might not. And there's no test in the world that can change that, no possibility of health improvements to reassure an employer, it just is what it is. None of us with these variable conditions can control them, whatever the latest trendy biopsychosocial model of "it's all in your head" the DWP have snatched upon as proof we can be removed from our benefit dependancy and forced into jobs that don't exist. Day by day we just don't know and can't control our conditions. So really....should an employer be expected to?
Sue's version here