Jetta
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Jetta, late-20s, has epilepsy.
She told the Royal Commission her seizures are triggered by stress. After having a seizure, she is so fatigued she can’t get out of bed and attend to her personal care for several days.
Jetta worked in retail for almost 10 years. One time, she was serving customers when she started to experience pre-seizure symptoms.
She told her supervisor and asked if she could leave the floor and sit down, but they were dismissive.
Moments later, Jetta fell backwards, crashed to the floor and lost consciousness.
Witnesses later told her that her supervisor sounded the emergency alarm used for violent customers. Staff came from everywhere and evacuated the store. One staff member had a child with epilepsy and was able to administer the appropriate first aid.
Jetta needed several stitches in her head.
‘The following week I returned to work and the team leader came up to me, and the first and only thing she said to me was, “Don't you ever do that to me again."’
Jetta moved to a different workplace and after some time became a team leader.
A few years ago, a new staff member started in Jetta’s team.
She allocated him a number of tasks and was shocked when he told her, ‘You cannot tell me what to do, you're female.’
Jetta spoke to her supervisor and the staff member was moved to a different team.
A few weeks later, he returned to Jetta’s team.
He refused to complete his allocated tasks, again telling her it was because she was female.
Jetta immediately contacted HR.
‘[They] had an unsupportive tone of voice and wanted to come and assess the situation as they doubted my rationale. The stress of this triggered me to have an epileptic seizure as soon as she walked into my outlet.’
The HR manager didn’t know what to do, and tried to give Jetta water.
Jetta lost consciousness.
Another staff member, familiar with epileptic seizures, intervened and provided first aid.
‘I never got rostered for another shift after this day.’
Jetta contacted a lawyer who advised there was nothing she could do because she was a casual employee.
‘I had never seized whilst on shift for this employer and they were unaware of my epilepsy, making me think this was the reason why I failed to be rostered on again.’
Jetta has not been able to find work and relies on the Disability Support Pension (DSP).
She is not eligible for supports from the NDIS and struggles to pay her rent and bills.
Several of Jetta’s front teeth are broken because of falling during a seizure.
‘As a result of dental care not being included under Medicare I have been unable to get these repaired as I am restricted by the amount of savings I am able to accumulate whilst living on the DSP and rising cost of living.’
Every two years, Centrelink reassess her eligibility for the DSP.
‘The two-year reassessment period is a scary and stressful consequence that leads to further seizures.’
Jetta’s drivers licence has been medically suspended and she uses a discounted taxi service.
Drivers regularly question her eligibility for the service, suggesting she is too young and not disabled.
Jetta believes there needs to be increased awareness of epilepsy, including the impacts it has on a person’s daily life.
‘Furthermore, education on how to react when a person is seizing.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.