If your disability is erratic and poorly controlled it seems highly likely that you’ll have the misfortune to experience several ‘intermissions’ in your life, particularly on the employment front. Epilepsy can certainly fall into this category and our son is currently experiencing his first ‘intermission’ having worked part-time for nearly five years in a local supermarket. In the first few years there were many plusses for him – social contact (with colleagues and customers), meaningful occupation, feeling valued, not to mention finally learning and earning. However, sadly, brain has abruptly stopped ‘play’, so he is having his first ‘intermission’. The best plan of action seems to be to take a few months out and try to do something constructive in that time. Mercifully, it is the summer so pleasurable activities are more abundant.
Keeping busy is essential to keep mind and body together in these circumstances so inevitably we look for voluntary work. Numerous local charity shops are desperate for volunteers, but we’ve been here before and it didn’t really ‘float his boat’. Other organizations are keen to take on a young lad who has some work experience until the ‘e’ word disclosure comes up. Suddenly, talk of long complex risk assessments enter the equation and prospects of even voluntary work become a trial. Astonishingly even a simple job in a hospital, where he would be accompanied, is considered too precarious! So much for honesty always being the best policy. There is also the considerable irritation of getting from A to B in a semi-rural area on the even decreasing public transport.
In between reluctantly signing up for benefits again, a couple of social enterprises do offer some respite activities, one in the form of arts and crafts, another varying workshops and plastic recycling. These organizations do a fantastic job covering a multitude of needs for everyone concerned and probably prevent many attendees from losing their marbles when life is more problematic than most.
If there is any chance of health appearing to be on a more even keel, the CV will be updated (at least he’s got some genuine work experience now) and the job search will start. However, this will no doubt still be a steep uphill battle as people with epilepsy have one of the lowest rates of employment amongst disabled people. Only 34% of people who consider epilepsy their main health condition are in employment according to the Office for National Statistics. In some ways I’m realistic about this, after all what job can you do if you keep dropping unconscious on a regular basis? On the other hand, having meaningful occupation, company and stimulation for the little grey cells is often the key to keeping someone seizure free but he’ll need more than good luck trying to prove this to an apprehensive Health, Safety & Risk Assessment employer.
Ironically, our son is interested in care work and having been well battered by life himself, has a naturally empathetic nature, but having epilepsy can be a barrier to this too. We still recall his delight and enthusiasm a few years ago, when he showed us the written letter offering him a post in a local care home. However, celebrations were short-lived when a fortnight later, the head office of the organization promptly put their foot down despite him having discussed his epilepsy at length at interview.
I wish the answer to our predicament was as simple as pausing for an ice-cream or popcorn in the intermission. Wishful thinking. However, perhaps I will derive some pleasure if I advertise our frustration with a tattoo in the middle of my forehead declaring:
“You know nothing…. welcome to our world!”
P.S. Epilepsy Action, November 2023: “Recent research shows that 42% of employers in the UK would be inclined NOT to hire someone with epilepsy to save their company potential challenges, even though they know this is discrimination”.
