Fit to work*

According to all kinds of official measurements, I'm disabled. I have had epilepsy since 1996 (officially diagnosed in 1997 after a battery of EEG tests). My epilepsy entitles me to a Disabled Railcard, a concessionary bus pass, free prescriptions, Disability Living Allowance and various other things.

And yet I don't feel disabled. I have roughly 2 seizures a year, which is not a lot, although they are full-blown ones and 2 minutes thrashing around on the floor can effectively take 24 hours out of my life as I recover. The problem is I never know when one will strike as I don't get "warnings", which means that technically I'm at risk every minute of the day - I could drown in the shower, collapse while crossing a road or die from SUDEP. So far I've been lucky - almost all my seizures have taken place within the home and I have rarely injured myself. I do take care to reduce risks, especially when out and about, but I don't wrap myself in cotton wool. I just get on with life. If I have a seizure, so be it.

I'm relieved developing epilepsy has not affected my ability to work, apart from the occasional speech problems due to loss of vocabulary (the part of my brain where my seizures start controls this skill), which is a pain in my line of work. It's caused the odd hiccup when interviewing people on making phone calls. Otherwise, it's business as usual. Freelancing gives me extra freedom because of the epilepsy - I don't have a stressful commute, I can rearrange things if a seizure strikes and I don't have to plead for time off for medical check-ups. Having control over how I work matters because I'd be lost without work. I've always worked and been independent - not being able to work would mean a major reassessment of who I am.

Who I am is still me, plus epilepsy. I don't hide my condition and I don't get offended overly much if people make jokes about fits (although people being PC and saying "thought shower" instead of "brainstorm" does offend me). I don't care about being judged either.

Where do I fit in on the great scale of disability? Somewhere fairly insignificant, I expect. I suspect that because I don't see myself as disabled, others don't either. My disability is not obvious, I'm not a wheelchair-user. Occasionally I get asked why I have a concessionary bus pass because I don't "look" disabled. Er, it's because I'm not allowed to drive, that's why. In fact, the biggest hassle is people finding out I'm not allowed to drive and assuming I must have been nicked for drink-driving. So now I'm in the habit of tacking "for medical reasons" on to the end of that particular sentence.

Interestingly, over the last couple of years I have been stunned to discover just how many of my freelance colleagues working in journalism and editing also have disabilities. Freelancing is clearly an attractive option when you have health and mobility issues to take into account.


* This is a "Blogging Against Disablism Day 2008" post. Read more here.