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Dr Shannon Morton & Blythe
Mr River Night
Leading National Disability Sector Advocate
Co-founder at Developing Australian Communities
Public Officer at the National Disability Leadership Organisation
Today we had the opportunity to talk to Dr Shannon Morton and her daughter Blythe about epilepsy and what they thought about today’s story regarding a staffer in our nation’s capital.
It is alleged that a staff member who lives with epilepsy working in our capital asked for simple lighting changes to avoid triggering seizures and was denied this simple accommodation, resulting in seizures.
Blythe is fundraising for Epilepsy Queensland and would like you to know some pretty important things all of us should be aware of across Australia.
As Epilepsy Queensland shared this week, childhood is meant to be carefree – a time of laughter and learning. But what if a health condition took that away from you? What if every day was blighted by fear and uncertainty, impacting everything from sports and sleepovers to education and even future employment?
For 13-year-old Blythe, devastating seizures are just the tip of the iceberg, with her diagnosis leading to school exclusion, social isolation and bullying.
“School has been problematic. I get the sense that while teachers and staff feel sympathetic, they don’t really understand the severity of my condition”, said Blythe today.
“The worst-case scenario, if I have a tonic-clonic seizure, is that I could choke, I could suffer a brain injury — I could die. I wish people understood, said Blythe.
“I’ve felt excluded and ignored by schools and have been bullied by other students.
“One boy tried to trigger a seizure by putting a video with flashing lights in front of my face. I even moved schools, but it happened again.
“A girl threatened to trigger a seizure and, a couple of weeks later, actually tried to do it by flicking hallway lights on and off, really quickly, over and over.
Mum Shannon reached out to Epilepsy Queensland.
“The day Blythe returned to school after her diagnosis, we were literally turned away. We were told that the principal had decided that she wasn't allowed to be in school until she had a formal treatment plan signed off by her neurologist, said Shannon.
“We were completely blindsided. That process could take weeks. I told them that if she did have a seizure all they were expected to do was to call an ambulance - just as we would have to do. But it was a ‘no’, right up until Epilepsy Queensland helped me provide them with evidence that they were discriminating against her by denying her access to education. It was terribly confronting.
Blythe says she lives in fear of every fan that makes a light flicker, every car journey under trees and through dappled light, every time she encounters a fluorescent light that’s flashing because it needs to be replaced.
“It’s just really tough to have to keep advocating over and over and then be made out that she, and we as a family, are the difficult ones. All we’re asking for is for her to feel safe and to be treated fairly, said Shannon.
“Hearing stories in this day and age of staff experiencing seizures because a workplace couldn’t be bothered to simply change a light, or a child not being able to attend school because an education department doesn’t provide simple training and policy is disgraceful”, said National Disability Advocate Mr Night.
Key Facts:
Current facts and figures
Epilepsy is a tendency to have recurring seizures.
There are many different seizure types and seizure syndromes.
Epilepsy is not just one condition; there are many forms of epilepsy.
Epilepsy can affect anyone- any age, any background, any level of intelligence.
Around 3-4% of people will develop epilepsy at some stage in their life.
Approx. 200,000 children and adults in Queensland will acquire epilepsy during their lifetime.
Epilepsy Queensland Home https://epilepsyqueensland.com.au/
About us:
Sponsor Blythe today and help support all Australian's living with Eplisepsy
Contact details:
Dr Morton, Blythe and River are available for comment and interviews.
M 0401429403