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30 minutes with cheeky Jo Adams

What is the exact title of your role? 
I am Founder and Head Cheeky Neuron Handler at The Cheeky Neurons

Where do you currently work & how long have you been working there?
I am currently working full time at The Cheeky Neurons-  an epilepsy awareness project that I started in 2017 while studying.

Where else have you worked, studied or volunteered in your life?
My education and work has always been driven by my fascination with the brain and behavior! Through my early studies I ultimately became a neuroscientist and I was involved in research that ranged from studying brain cells in culture to cognitive testing in dementia facilities. I spent over 10 years teaching psychology and neuroscience at Monash University and Monash College, which I loved. Sharing my passion about the brain with students and getting them excited in-turn was such a rewarding experience. Then in 2016, I decided to run away and join the circus – the Science Circus that is! This huge career change was prompted by a desire to get the broader community excited about science, and I spent 2017 as a touring presenter with the Shell Questacon Science Circus while studying a Masters of Science Communication (Outreach) at The Australian National University in Canberra.  It was during this time that The Cheeky Neurons were born – combining my love of neuroscience with my love of craft and my passion for ending the stigma associated with neurological disorders.

In the past I have volunteered as a craft teacher and demonstrator, including demonstrating spinning (of yarn) at the Royal Melbourne Show. I also regularly volunteer as a board game teacher / facilitator at an annual convention in Canberra and at smaller gatherings.

What do you think is the most exciting/important change epilepsy in the education sector and why? 
I think it’s great that people are talking more about epilepsy and schools are actively promoting epilepsy awareness. There’s a greater recognition from teachers and schools that even when there is no seizure activity, students with epilepsy might still be affected by their condition. While I know that there is some way to go before we reach universal epilepsy awareness in schools, this is a really positive shift in the classroom as students affected by epilepsy aren’t so readily left behind.  

What do you feel the main challenges are for a child living with epilepsy?
Kids with epilepsy and their families are still confronted by huge amounts of stigma. I’ve heard some awful tales from families about the discrimination that they have faced - it’s truly heart wrenching! Like all stigma, this is largely based on a lack of understanding about epilepsy specifically, and the brain more generally. Brain-science isn’t generally taught in schools until the senior years, which I find a bit frustrating since we all have a brain, which means that we are all in a position where we could be affected by a neurological disorder like epilepsy. We learn about the rest of the body in primary school – most six year olds can tell you something about how the heart and lungs function - yet the brain remains a mystery. This means that kids affected by epilepsy are in an environment where their peers don’t have the ability to understand their condition. This coupled with fundamental human traits like fearing things we don’t understand and seeking quick and easy information (even if it’s misguided), can mean that kids affected by epilepsy face significant discrimination from their peers that stems from the stigma that prevails in the community at large. Parents might try to protect their children from stigma by not talking to outsiders about their epilepsy, but in doing so they can also fall into the trap of bolstering that same stigma – becoming stigma-coaches – by reinforcing the idea that there is something ‘wrong’ with the child that should not be spoken of. This stigma needs to be broken at its root! We need to address the lack of understanding about the brain and neurological conditions like epilepsy so that one day, having a conversation about epilepsy will be as everyday as having a conversation about a chronic physical condition like asthma.

Tell us about your experience with epilepsy education and why you are so passionate about raising awareness and understanding of epilepsy.
I have always been passionate about tackling the stigma that surrounds both neurological and psychological conditions. I’ve seen this stigma directed at people close to me and I’m determined to be part of the solution.  

Since the inception of the Cheeky Neurons project, something that I have seen repeatedly is that children are fascinated by the brain and have a great capacity to learn about it when information is pitched at their level. Not only that, they love telling other people about what they have learned – so knowledge can spread pretty fast when it’s in the hands of children!

What do you love about your job? 
I recently had a wonderful experience with a young girl who created her own Cheeky Neuron character at an event I attended, and proceeded to tell her mum all about neurons, how they work, and how sometimes they can be a bit cheeky. Her mother thanked me emotionally; telling me that she herself had epilepsy but hadn’t told her children because she wasn’t sure how! They left that event talking openly about the brain, neurons and epilepsy and the door was open for the family to talk about how epilepsy affected them. Having experiences like that are what I love about my job. Knowing that I have made life with epilepsy a bit easier for that family is just so rewarding!

Where would you most like to travel?
This is a really hard question – I want to travel everywhere! However, if I was to plan my next trip it would probably be to Hawaii. I am fascinated by volcanoes and there’s very few places on Earth that you can witness their power quite like you can there.

What is your favourite food?
Home-grown tomatoes from my vege patch!

Describe your most embarrassing moment? 
It wasn’t ‘embarrassing’ at the time, but a moment that has stuck with me and drives me to this day happened when I was about 14 years old. I was in central Melbourne with friends and we saw an elderly woman struggling on an escalator and calling out for help. I distinctly remember looking around to see what everyone else was doing, and when the people around me did nothing, I also did nothing to help! I have felt deep regret and personal embarrassment about that day ever since.

It wasn’t until I studied social psychology at university that I began to understand my behaviour. It’s is called ‘the bystander effect’ and pretty much everyone will succumb to it at some stage in their lives. It’s the reason that people are less likely to get help when they need it in a crowded area compared to a quiet unpopulated area, and it’s the reason that I looked to others and then did nothing that day. I also learned that you can counteract the bystander effect by stepping forward when others don’t – being what my hero Philip Zimbardo calls an ‘everyday hero’.

So, my embarrassing moment has in fact been a key influence in who I have become and I guess I’m grateful for that. I can’t say I wouldn’t change it if I had the chance though…

What/who is your favourite book/author? 
My favorite book is Fahrenheit 451 by Ray Bradbury, and my favorite author is Douglas Adams.

Who would you like to meet? 
This list is almost endless, but it’s heavily populated by inspiring women especially those who were pioneers in STEM (Science Technology Engineering and Maths). I’d say a top candidate would have to be Florence Nightingale. She famously founded the first school of nursing and helped many wounded soldiers through their darkest hours and for that alone she is a hero. But, she also used statistics and clever communication to convince legislators to make real changes to hygiene practices, which contributed to saving countless lives!

What genres of music do you like listening to/favourite song?
I listen to a range of music, but I love my hard rock!

Do you have any interesting hobbies you would like to tell us about?  
I’m what’s known as a spinner & hooker- I spin my own yarn and I crochet it into all kinds of things (even Nellie the Cheeky Neuron is made from hand-spun yarn). I also love to play board games with my husband and friends and we regularly attend board-gaming conventions all over Australia.

What do you feel would greatly improve epilepsy care currently in Australia? 
I believe that we need to get to a stage when open, everyday conversations about neurological conditions like epilepsy are commonplace. You’ll often read statements along the lines of “everyone knows someone with epilepsy, but they might not know it” which really highlight how people with epilepsy often don’t feel able to be open about their condition. I’ve met some brave people who are willing to stand up and talk about their experience of epilepsy, but its far from the norm, and I can understand why. Centuries of misunderstanding about the causes of epilepsy has contributed to ingrained stigma in our society – and it’s hard to be open in the face of that. Yet, having to be secretive about your epilepsy can be very stressful too! I believe that by having everyday conversations about the brain and epilepsy, we can contribute to normalizing those conversations and increasing general knowledge about the brain. This will have a hugely positive impact on people with epilepsy and other neurological disorders in the long term.

Queensland tour details
Epilepsy Queensland's beloved mascot, Little Poss, has invited The Cheeky Neurons to his Birthday Party on Sunday 24 June where they will get cheeky with Queensland families affected by epilepsy. 
The Cheeky Neurons will also be appearing at Queensland Museum on 26 & 27 June. Drop in anytime between 10 am & 12 pm to chat about brains, neurons and epilepsy while creating your own Cheeky Neuron to take home ALL FOR FREE!