By Deron Hamel
Joe Stanislaw says the best results from widespread screening of the documentary On the Edge: Living with Epilepsy would be more awareness, a greater understanding of the potential people with epilepsy have, and more interest in research.
Joe is the father of Louis Stanislaw, a U.S. filmmaker who has coped with epilepsy his whole life. Louis wrote and directed the documentary, which was released in 2013.
On the Edge tells the painful truths, misunderstandings and difficulties of living with epilepsy at every turn; from family life to school, to leaving home and starting a career, to forming lasting bonds with others.
The National Educational Television Association (NETA) has announced it will feed the documentary to the more than 350 PBS stations across the U.S., as well as some affiliated stations in Canada, as part of a national effort in the U.S. to kick off National Epilepsy Awareness Month in November.
“The best possible outcomes would be more awareness from society at large of the enormous amount of people who suffer from epilepsy – that would be No. 1,” Joe tells Voices of Epilepsy. “No. 2 would be a greater understanding of those people who are suffering with epilepsy and the potential those people have as individuals – personally, professionally and socially. No. 3, hopefully (the film will) direct people to more research being done to find solutions.”
The documentary explores the stigma attached to epilepsy. Epilepsy often frightens people who are unfamiliar with the condition, and this has a detrimental trickle-down effect to those living with a seizure disorder.
This stigma can cost people their jobs and friendships, which can lead to other conditions, most notably depression and anxiety, the film explains.
Perhaps most importantly, the film puts faces to the condition, which is meant to inject a better sense of empathy into those listening to the many personal stories unfold.
Each PBS station will decide when and how often it will broadcast On the Edge. PBS has no national programming, so each of its affiliates decides its own scheduling. PBS stations can screen the documentary as many times as they want.
Joe says the documentary has received lots of positive feedback since its release three years ago – and he hopes the momentum continues.
“For people living with epilepsy, there has been a profound sense of ‘thank you’ for creating a better sense of understanding (about epilepsy),” Joe says. “It has changed people’s attitudes. One guy I’ve known for years said, ‘I’m now even more attentive to people on the street who may be in a wheelchair or have visual impairment and want to help them out.’ That’s very powerful.”
The documentary also features interviews with people who have never before gone public about their condition. This, Joe says, is one of the film’s strongpoints.
“People have been told they shouldn’t talk about (their epilepsy), and that’s a mistake,” he says.
Louis is currently working on a book about people’s experiences with epilepsy, which will be published in January.
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