As we continue to mark Disability History Month, Bekki Smiddy writes about chemist and inventor Alfred Nobel. His legacy are the Nobel Prizes. Nobel experienced epileptic seizures throughout childhood and here Bekki talks about her own experience of epilepsy and why it’s important we recognise that disability is not a bar to achieving great things in life.
I was diagnosed with idiopathic generalised epilepsy when I was eleven, after several years of unexplained seizures. I had no idea what any of it meant. And I didn’t really care. What I did care about was the way people had started to look at me.
Before I was diagnosed, I figured epilepsy meant I fell down and couldn’t remember sometimes, it wasn’t a big deal. It was other people that made it a big deal.
Every time the word epilepsy came up, everyone in the room would look at me.
My classmates would whisper the word “freak” as I went by.
I got sent out of the class by my teachers for having seizures.
I felt embarrassed and ashamed for something that was completely out of my control.
Leaflets on epilepsy are filled with medical jargon and only explained what was going on with my brain, and scared me with talk of Sudden Unexpected Death in Epilepsy Patients (SUDEP). What I needed to know was how it would affect my life, how it would change it, and how to not feel so alien.
Looking through history
When first diagnosed I searched for historical figures who had epilepsy. I needed to know that I wasn’t going to be limited; that I could still achieve what I wanted with my life. That I wasn’t “wrong” somehow.
Throughout my adolescence and education I used it as rebuttal for those that attacked me or belittled me for my epilepsy.
We have been authors, military and political leaders, philosophers, scientist, composers and painters. Having a neurological condition didn’t have to hinder me in any way.
Nobel didn’t hide his disability, in fact he wrote poetry about what are perceived to be childhood epileptic seizures.
“…the convulsions followed, til I gasped
upon the brink of nothingness – my frame
a school for agony with death for goal”
But it appears to be written out of his history like so many “invisible conditions”,
Disabled people need role models
Epilepsy charity websites I viewed had sections listing famous people with epilepsy. Yet, it is missing from many disabled people’s biographies. We all need role models, but especially disabled people as we struggle for equality and to enjoy the same life chances as non-disabled people.
Disability History Month is important because many people don’t see disabled people as an oppressed group or understand that the language often used and how our impairments are described, can be so damaging. When people talk about the economy being ‘crippled’, or say that someone is “having a fit” when they mean a tantrum can be so hurtful.
We need to know more about the lives of disabled people and I hope that Disability History Month will help dispel the myths and help improve attitudes.