14 March 2024

People living with epilepsy face serious stigma. Here's what they want you to know

| Morgan Kenyon
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Epilepsy ACT’s Ashleigh Gold says people living with epilepsy face serious stigma, particularly in school and the workplace. Photo: Epilepsy ACT.

There are more than 4500 people living with epilepsy in Canberra.

Epilepsy is a central nervous system disorder that disrupts nerve cell activity in the brain. The condition has a range of causes, including genetic disposition, head trauma and infectious disease – but sometimes, there is no identifiable trigger.

Ashleigh Gold worked as a teacher and a nurse before her role as epilepsy educator, comprehensive support and peer support coordinator at Epilepsy ACT.

She explains the biggest hurdle for those living with the condition is overcoming the stigma that surrounds it.

“Stigma surrounding epilepsy can be really challenging. People with epilepsy face so much discrimination, misunderstanding and even exclusion from activities or opportunities simply due to misconceptions about their condition,” she says.

“There’s a widespread perception that epilepsy always looks like a tonic-clonic seizure where the person loses consciousness and may fall to the ground, have rigid muscles and experience convulsions.

“In reality, there are more than 60 types of seizures. Some people have seizures that occur without an obvious trigger and can be hard to spot once in motion. Absence seizures, for example, are often described as looking like the person is daydreaming.”

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For schools and places of work, these misconceptions can lead to fear. People with epilepsy can be perceived as less intelligent or less able – some out there even believe the condition is contagious.

Ashleigh says education and awareness are crucial to challenging these misconceptions and creating more inclusive and supportive environments.

“We’re so good at being inclusive of other chronic conditions and disabilities such as asthma, anaphylaxis and diabetes – we’ve proven we can do it, but epilepsy has somehow missed out.

“Without proper support, people with epilepsy can feel isolated, undervalued or even unwelcome in their communities, schools and workplaces.

“One in four of them experience anxiety or depression. Stress can lower seizure thresholds, making seizures more frequent, so in the face of stigma, it’s a vicious cycle.”

boy painting while sitting down

Seizures are most common in young children and the elderly, but they can happen at any age. There are more than 60 types, each with its own presentation. Photo: Epilepsy ACT.

Epilepsy ACT offers training for employers, educators and carers to help them become more informed, aware and equipped to care for and advocate for people with epilepsy.

“Providing accurate information, promoting diversity and inclusion initiatives and offering support services to combat that stigma and improve equal opportunity is really important,” Ashleigh says.

“We offer ‘understanding and managing epilepsy’ training for teachers, disability and aged care workers, families, workplaces and more.”

Having a comprehensive epilepsy management plan tailored to the individual is often the first step in gaining a level of security and understanding to help fight fear caused by misunderstanding.

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An epilepsy management plan is a resource for anyone with a person with epilepsy in their care that helps them understand what to do (and what not to do) in the event of a seizure.

“Given that Canberra is such a tight-knit community and we are a relatively small organisation, Epilepsy ACT has the unique ability to tailor epilepsy management plans for individuals to workshop with their school, workplace and home,” Ashleigh says.

“We can also tailor training for individual epilepsy management plans.

“I did training at a daycare, for example, where we specifically went through that child’s plan. The parent was able to describe what they do at home and what it looks like, so the whole cohort was well prepared.”

World Purple Day, an international day of recognition dedicated to increasing awareness and support for people living with epilepsy, is on 26 March.

“Getting involved in World Purple Day is easy,” Ashleigh says.

“It can be as simple as wearing something purple on 26 March. You can also host your own event or challenge, donate to the national Make March Purple campaign or share your own epilepsy story with us online.”

Visit Epilepsy ACT to learn more about epilepsy management training in Canberra or to plan your support for World Purple Day.

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Capital Retro11:06 am 16 Mar 24

I urge anyone that may have been diagnosed with an untreatable middle ear problem called labyrinthitis to seek a second opinion from a neurologist because you may have a form of epilepsy which is treatable and usually allows one to regain an unrestricted driver’s licence and live a very normal life.

Ignorance is not bliss. As someone who had a specific form of epilepsy I experienced so much ignorance and prejudice when I was younger. Anyone (anyone) can have a medical episode at anytime. Pre judging whether a person with epilepsy may or may not have an episode, and whether or not that episode may affect or impact anything is impossible and amounts to prejudging.

Live. And let live.

Sadly, religion and superstition as well as ignorance and fear have played into this stigma and continue to do so. People are afraid of that which is unfamiliar and not understood, filling the gaps with assumptions, myths and legends. Every disability brings a different ability and perspective that can enrich an environment if stigma and ignorance is overcome.

There could be much better education in our schools about human diversity, rather than a focus on what’s considered ‘normal’ which is what’s most common between people. We need to understand the wide range of human differences, so we can appreciate the benefits of a team that makes the most of those differences for a better result overall, than is possible with an homogenous bunch of people with few differences in skills or perspectives.

HR in every organisation needs to be equipped with knowledge of all the differences between people, to know how best to support them and the organisation. They need to ensure people managers understand their people, so they have the ability to manage them most effectively. Unfortunately this is not often the case, with many in HR knowing little about the varying capacities of human beings.

We have progressed since the days when people were not hired in some organisations if they were left-handers, as this was seen as inconvenient and troublesome for employers because work accommodations needed to be made for this difference. However, we still have a long way to go.

Capital Retro11:46 am 19 Mar 24

Also “left-footers” were not employed in some protestant strongholds. It worked both ways.

@Capital Retro
Sadly, CR, you are correct there.

I remember, a lifetime ago, as a young lad about to head out into the ‘working world’, my mother cautioning me to not mention I was Catholic, lest it be detrimental to my employment prospects.

If a person with epilepsy is able to do what their job demands, then fine. What concerns me, however, is that, in a push to be more inclusive, some people, anxious perhaps not to appear ignorant or bigoted, will fail to discern which epilepsy is workable or not, and wind up hiring someone who can’t do the job, potentially putting people at risk. I think this needs to be acknowledged as a possible problem – not just with epilepsy but other things as well – and then for strong measures to be put in place to prevent it, such as giving employees the confidence to say no, when necessary.

@Vasily M
“… the biggest hurdle for those living with the condition is overcoming the stigma that surrounds it.”
Thank you for the QED … I guess she could have added “… the stigma AND IGNORANCE that surrounds it”.

JustSaying, what you’re doing here is just name calling. Go back to what I wrote and show me what was unreasonable in what I said

@Vassily M
I didn’t engage in name calling, I simply alluded to the fact that you are ignorant in regards to this condition.

If you had bothered to do even basic research, you would have discovered “Some areas of employment are unavailable to anyone with epilepsy, even if you have good seizure control. For example, someone with epilepsy cannot work as a pilot or a commercial driver, such as a train or tram driver.” (https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/epilepsy-and-employment#)

JustSaying, why would I need to do research to know what I already know? That is, I know epilepsy makes the epileptics unfit for certain jobs. My problem is that some people, feeling under pressure from the woke and inclusive mob (which can be pretty vicious a lot of the time), will hire the epileptic all the same, and therefore put people at risk. What I want, then, is for employees to be given the confidence to say no to hiring epileptics, when it’s necessary. This is a reasonable position.

Smart people inform themselves before making decisions that impact them. If they’re managers and thus responsible for others, they’re legally bound to inform themselves of any risks to those people, including risks to those with disabilities (such as ableism and discrimination) as well as those to the so called ‘able-bodied’. If they’re too stupid or too lazy to do so, they shouldn’t be in a position to make those decisions. Managers need to do their job.

It sounds like you know a lot of stuff. Expecially about the scary woke mob. Dear me…

@Vasily M
“woke and inclusive mob”
Do you know the origing of the term ‘woke’?
It is an adjective derived from African-American Vernacular English meaning “alert to racial prejudice and discrimination”. One thing is for certain – the term would never apply to you.
Nevertheless, your stereo typical attitude indicates what you know about epilepsy and employment is absolutely nothing.
Not only do employers (who do the hiring not employees btw) have the right to say no to hiring, for certain positions, those diagnosed with epilepsy, they have a legal obligation to do so.
Far from being reasonable, your position is jaundiced and myopic.

JustSaying said

“Not only do employers (who do the hiring not employees btw) have the right to say no to hiring, for certain positions, those diagnosed with epilepsy, they have a legal obligation to do so.”

Great. And if hirers should ever start to feel under pressure from the vicious and highly emotional (and irrational) woke mob, now that epileptics look like they’ll be making more noise in the hiring arena, along with others with disabilities, then I hope that they’ll hold strong and meet their legal and social obligations, there often being quite a gap between what people ought to do and actually do…especially when the vicious and highly emotional (and irrational) woke mob is involved

And so my position still holds and is very reasonable

@Vasily M
“… if hirers should ever start to feel under pressure from the vicious and highly emotional (and irrational) woke mob.”
Got any facts to support your outlandish theories. on people avoiding their legal obligations under pressure from this “mob”, or is it just your usual tin foil hat conspiracies.

JustSaying, we are dealing with diversity, equity and inclusion, a monstrous, woke model that puts equity quotas and the like before quality or merit – and all in the context of being overseen by the vicious, highly emotional and irrational woke mob. If that doesn’t necessarily entail an inevitable drop in quality hires, resulting in the neglect of legal obligations etc (which isn’t necessarily hard to get away with btw, especially when it starts off only small and incrementally)., then words have lost all meaning, to say nothing of human experience.

Regarding the latter, and looking at it from only a certain angle, I’ll simply point to my wife’s current employer. Without going into too much detail, so as to maintain all necessary anonymity, they are to uphold this and that in accordance with certain legal standards, and yet because the woke DEI virus has entered into the system, the employer now observes it (lest they be seen as bigoted by the foresaid woke mob), resulting in lower quality hires. As such, the legal standard is not upheld as well as it used to be, and not only is hardly anybody there (whether top or bottom) saying anything about it, but they don’t even know its happening, thanks to how drunk they are on this illusion of progress.

The two above examples alone – one logical and one experiential – should be ample to show that my position is reasonable.

Enough now. For I really shouldn’t have even had to come this far to prove what is clear to see.

@Vassily M
You have proven nothing, other than the fact that you are not tolerant or inclusive. Your “clear to see” jaundiced view is based on prejudice and narrow-minded speculation.

You state, without any factual foundation that “… the legal standard is not upheld as well as it used to be …” simply because you don’t like diversity, equity and inclusion. It obviously doesn’t accord with your model of the notional superiority of the “old order”.

You are right – enough for now. Life is too short to bother with those who are driven to perpetuate their tin foil hat conspiracies.

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