Charities raised objections when Rita Marcalo got a grant to explore her epilepsy on her own terms
Performance artist Rita Marcalo said she felt “guilty that I had perhaps short-changed people” when she failed to induce a seizure on stage as she had hoped, but pleased that her efforts had provoked a public discussion of epilepsy, disability and art in Britain.
Marcalo’s work, called Involuntary Dances, had received a grant of £14,000 from Arts Council England, and drew criticism from epilepsy charities who said it was dangerous and turned epilepsy into a “freak show.”
The artistic director of a dance company who has had epilepsy for years, Marcalo tried to induce a seizure by ceasing her medications, drinking wine, looking at strobe lights, eating dark chocolate, and depriving herself of sleep. Audience members were urged to document her seizure with their cellphones.
What Marcalo’s piece highlights is that adults with epilepsy own their own bodies and have a right to choose what to do with them. It illustrates that we are able to speak for ourselves, and don’t need charitable organisations to step in on our behalf. (It’s extraordinary that this is still an issue.)
She is also saying that there are worse things than having an epileptic fit. Several hundreds of thousands of us in this country live with epilepsy in one form or another, and our lives are not blighted … Marcalo’s performance will implicitly say: “It’s just a fit. Get over it.” She speaks for us all.
While certain circumstances may conspire to make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy.
And there’s the rub.
Living with epilepsy is as much about living with the unpredictability of seizures and not knowing when and where they might occur, as coping with the seizures when they do happen.
In the end it may be Ms Marcalo’s failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could.
Understanding epilepsy: One woman’s story — From the Times Herald-Record, Hudson Valley, NY