Every 3 months, a member of the Council of Management writes a blog for the Epilepsy Action website. These blogs provide a topical insight into the work of the Council, who the Council members are and what they’re doing.
1 May 2017, by trustee Richard Chapman
Over the years as my son was growing up he often complained that some aspect of life wasn’t fair. My response was often that unfortunately life wasn’t always fair. Of course, what I meant was that sometimes we have to accept things as they are not as we would like them to be. But I have never meant to suggest that things we perceive to be unfair shouldn’t be challenged.
Over the years I have also listened to others with epilepsy complain about some of the restrictions that society places on our lives often with a great deal of sympathy. They are seen as another set of hurdles which exclude us from ‘normal’ life, especially in the workplace. Many of these concerns focus on the blanket nature of some restrictions - or rather how they are interpreted and applied - and their severity compared to others with different conditions; something I had cause to reflect upon some years ago when my father suffered a heart attack and was only banned from driving for a few months.
Of course, while some of these restrictions exist to protect the person with epilepsy from harming themselves in a dangerous environment, many especially those to do with some areas of employment and driving are primarily intended to protect the public at large. Few would argue that isn’t an appropriate principle.
We have heard a lot in the news recently about the controversial back to work assessments which are supposed to inform whether those with disabilities are able to do some types of work. The consensus seems to be that the system currently in operation doesn’t do that and is seriously flawed. But if it is right to suggest that a particular disability shouldn’t automatically be deemed unfit for work and that judgement should be based on an individual assessment then surely it should follow that workplace restrictions on those with particular disabilities should be based on individual risk assessments rather than blanket bans?
There are few absolute restrictions and as the law has changed to require more flexibility so have some attitudes. But often old thinking persists and it is the label and stigma of epilepsy rather than the individual’s abilities and the degree to which epilepsy affects their daily life that is at the forefront of an employer’s mind.
Personally, I have never understood why it is okay for people with a history of well controlled epilepsy to work in the non front line roles in the armed services of some other countries but not here. But, more importantly to this discussion of what and what is not fair, the nature of many roles has changed and is changing because of technological advance which either mitigates or removes many of the risks that have been used in the past to justify restrictions. For example, no longer is modern heavy machinery operated by hand using levers and switches on the machine itself but via a computer keyboard in a safe environment. And driverless cars are being trialled and will doubtless soon be a feature of our lives and, if accepted into widespread use, will have safeguards to prevent accidents if the driver is unable to take back control of the vehicle.
I strongly believe that technology and artificial intelligence have the potential to improve everyone’s lives and make things safer for all. So let’s try to make sure that people with epilepsy reap the benefits and see barriers in their lives reduced as risks are reduced. I think that means we all have to be prepared to continually challenge things that we see as unfair. Sometimes life may be unfair but it shouldn’t be!