I will preface this blog by saying that the following story was told by a staff member who does not know I have epilepsy.
I was listening to a story told by a fellow colleague the other day and felt ill.
We were talking about social media and the consequences of its ‘freedom of speech’. It was the story of a terrible incident that happened at a previous school. A student had a seizure in the playground. As well as poking her, a group of students filmed the whole grand mal seizure and posted it on social media to further humiliate and punish the victim. What made it so outrageous for my colleague, is that it could not be removed because of freedom of expression.
For those of us who are fortunate that drugs generally control our epilepsy, it highlighted our worst fears. Even though I have tried to think of an equivalent to explain it to non-seizure sufferers, I can’t decide on an experience in this world that involves the same, unexpected, total loss and control of mind and body.
We all know that people can be cruel. Our parents prepare us for it when they teach us that well-known rhyme, “sticks and stones may break my bones but names will never hurt me.” ‘Say No to Bullying Day’ even educates people that being bystanders is equally as bad as being the bully.
It was my reaction to hearing the story rather than the event itself that inspired this blog post. Obviously I was a little shocked that my colleague didn’t know I have epilepsy. But given she has only been employed by the college for a few months and that I do not advertise my epilepsy; it made complete sense. Whilst I still feel no need to inform her, I was stunned by the attitude she had for a person with epilepsy.
It was sympathy and pity.
Despite all of her good intentions and passionate arguments against social media, I was riled. There is no doubt that the actions of onlookers was terrible and constitutes my worst nightmare; it just seems pointless to look on with pity.
What ever happened to empowerment? Instead of pity and sympathy, why not provide people with the inspiration to overcome adversity and live happy and fulfilled lives? As teachers, it seems really important that we do just this.
This isn’t the first time that pity got in the way of empowerment. In fact, I walked out of a talk on epilepsy in my early career. A student was newly diagnosed, and the boss thought it appropriate to educate staff. Essentially this was an appropriate reaction; instead, the medical presenter they employed did nothing but inspire fear and dread amongst staff.
What really bothered me was their refusal to let an excellent runner participate in the athletics carnival. How dare they? Yes, he might have a seizure whilst running, but he may not too. For crying out loud, I have had too many seizures in the shower! If I had drowned, I would not be writing this blog. Instead, I was well supervised and at most have been extremely embarrassed to wake up with ambulance personnel and family crowding around my naked body. Short of a few bruises and a messed-up tongue, I haven’t been significantly injured. In this instance they worried that he might dislocate his shoulder, or break a leg, or, or, or…
Give people appropriate information and choice and they will do what is best for them. Then empower them and be the support that they need.
If you have epilepsy, you just have a unique set of challenges to overcome. It doesn’t mean that you cannot. The problem is that too often this pity and ignorant fear mongering makes it impossible for people to feel empowered.
I’m one of the lucky ones I guess.