Epilepsy Representation in Media; Part 4 – Renée Williams, Purple Adventures Founder

Welcome to any new viewers who may have joined us here today because they saw the previous interviews and welcome back to anybody who’s been on my page before. If you’ve read this series in order then congrats, you know what’s going on and you’ve reached the final level. If you somehow, for some reason, came to this page of the series’ first, then I guess I better explain what’s happening.

I’m Renée, I’m 22 and, while I may be too ill and disabled to work most jobs considered valuable in a capitalist world, my job is to share knowledge and create awareness as an advocate in the medical field while also raising attention to the intersectionalities within that category. This all includes making original work that spreads across multiple media platforms that I manage on my own, helping make educational modules for medical professionals in team with other organisations and speaking and learning at conferences and events. I’m also an ambassador for the official Purple Day organisation, an ambassador for Epilepsy Queensland Inc. and am a member on the consumer advisory board for the Check Up organisation.

This all keeps me busy but it’s my job therefore it’s a tad bit easier to fit this in than it was for others to fit me in to be interviewed for this series.

I have interviewed three vastly different people with equally as different experiences and connections in regard to epilepsy, including an epileptic Paralympian, a mother of a young child with multiples types of epilepsy and an Epilepsy Nurse Practitioner. Their interviews were all about the same topic, “Epilepsy Representation in Media”.

Now it’s time to interview myself using the same base questions that I used for the previous interviews, however if you’ve seen any of my content before you know I can go a bit off course at times.

My own experiences with epilepsy representation in media have been quite a mixed bag.

On one hand there was a time I would never speak to more than three people about my epilepsy but now I am constantly accurately representing my own experiences with my epilepsy on my own media platforms.

While my media platforms may be an honest representation of a form of epilepsy it also, however, isn’t a representation of all epilepsy. I am trying to change this by doing more series like this though, to use my platform to spread the voices of different experiences. Equality and justice don’t exist without intersectionality.

I also have the experience of news media as I’ve been interviewed for radios, newspapers, and television multiple times. In short, they try their best while interviewing me and they ask all the right questions but, something always gets reported wrong. I’d prefer if the incorrect reporting were just misquoting me on an opinion, but they usually misquote a statistic which perpetuates falsehoods into the world.

I may never get another interview again once this goes live but we must keep our news media liable and accountable somehow.

To somebody who knows nothing about epilepsy, they’ll see that report and think “wow, I just saw disability representation and I know a bit more about that condition.” and they’ll go off into the world with their ‘not really a fact’ “statistic” and share it thinking they’re a better person for it. To the rest of us, we see or hear that incorrect statistic quoted in the news and go “no, not again. Another myth I must face at some point.” and we go off into the world waiting for that to blow up in our face.

I’d also like to add that every bit of information that has ever been misquoted during an interview with me has come from the reporter not listening to me quoting statistics or not reading the press release/packet they are given before even meeting with me as I make sure more than what they need is there, I try to avoid misquotes and I’m an organised professional prepared for people to forget things or research from unreliable sources.

However, I too am a simple person who just wants to see themselves represented in media without seeing themselves on camera for a misquoted interview. I want to see storylines that encapsulate what my loved ones and I go through in fictional media or I want to see documentaries about people like Lucky Patterson who defied the fear most people with epilepsy have of water to go on to swim at the Paralympics. I’d also like to add I would like to see both fictional media and that proposed documentary be done accurately and with respect and epilepsy awareness consultants who actually have epilepsy.

My first experience with media after diagnosis, and I’m talking almost immediately after diagnosis and while still uncomfortable telling people, was in the fictional media in Teen Wolf. Now I’ll admit I probably saw a few “shock value” seizures in random shows or movies between diagnosis and watching this storyline but I don’t remember them as much and I also don’t believe a poorly depicted tonic-clonic seizure thrown in for shock value is epilepsy representation.

I don’t want to go into spoilers, but they show this shy and insecure female character (Erica) dealing with all the negatives, from not being able to participate in all physical education class tasks to medication side effects and of course they style her to have wild hair and an acne covered face. She’s then bitten by a werewolf which cures her and suddenly she’s hot. Clearly the epilepsy and the sad representation was just to make you feel bad on her as the wolf prayed on the weak and vulnerable. She doesn’t let go of her trauma of living with epilepsy so easily though with her snapping at character Scott in their high school hallway, detailing how she still remembers, and is clearly very angry about, the time she had a seizure at school and wet herself and people just laughed and recorded it all to put online.

I can’t say this experience helped with my anxieties about going through the exact same problems at my own school but it was somewhat accurate so I can’t fault them on that. I just wish I had seen a realistic positive in my first experience. Of course, that’s hard to ask of a show that’s centres around mythical creatures which I understand and respect.

My favourite representation comes from a show called The Fosters.

This show covered many real-world topics, unafraid to speak the truth and spread knowledge, so when they decided to cover epilepsy I was ultimately nervous about how they would portray such a thing but I was also proud and honoured that my favourite show would touch on a topic so close to home. I was also honoured to get the opportunity to briefly chat with one of the writers and directors of this show to explain how much that representation means to me and tell them how well I think they did.

Again, I’ll try to avoid spoilers, but I will describe certain scenes more specifically here so apologies in advance.

In season 4 of The Fosters, Jesús suffers a TBI (Traumatic Brain Injury) and this causes him to develop epilepsy which is a common side effect of TBI’s. Through season 4 and 5 of The Fosters we follow Jesús’ journey quite in depth which brings up a lot of moments for people watching the show to pause and discuss. We see real difficulties of living with epilepsy, living with a loved one who has epilepsy, and real positives.

While trying to learn to live with a TBI, epilepsy and his new medications while already having been diagnosed and put on meds for ADHD before the show even begins, we see Jesús deal with some anger issues.

I was scared at how much I related to the anger he felt.

He felt this anger due to people treating him differently, having to learn how to live differently but also due to the damaged brain and the medications. I have experienced all of it. While I did not trash my brothers’ room like Jesús had, I have flipped my own mattress and upturned a few things in my room in a fit of rage.

The differences between Jesús and I here is that the shame that immediately follows the fit of rage forced me to clean up my room before anybody noticed then cry silently, while Jesús got a giant hug from his understanding brother.

I’ve since briefly discussed that moment with my mum due to the conversations this show brings up but that was a few years after the incident.

Now don’t get me wrong, when his brother Brandon comes in to see his room practically destroyed, he’s frustrated but Brandon isn’t typically one for violence, so he has a conversation with his brother where Jesús essentially has an emotional breakdown, cries like I did, then gets a loving, supporting and understanding hug from his brother. He got the reaction I needed but was too afraid to reach out for because when you’re young and this new, scary disease takes control of your life and all you’ve been shown in the media is rejection, that controls your life too. I was too scared to let my mum see that side of me out of fear of rejection when all along I should’ve known, like I do now, that my mum is Brandon and she will have moments where she’s frustrated or doesn’t understand but she will listen, she will wipe my tears and she will give me my giant, loving, supporting, and understanding hug.

The other scene that brought me to tears, and I mean horrifically hideous sobbing, was a scene where his parents forced him to go to a support group and it becomes too much for him.

Somebody, who remains unnamed and is simply a character sharing the relatable experience the writers want to get across, is in the room and sharing their experiences about how they totally blew up over a board game with a friend but their friends and family who spent all those days in the hospital with them still don’t get that they can’t always control their emotions anymore.

The person goes on to say how because they look fine their loved ones think they should be how they used to be; they don’t understand.

Their loved ones are described as thinking “you’re either being defiant, not trying or faking it to get off easy.”

This means “they end up talking about you behind your back. Not sharing stuff with you because they think that you can’t handle it. It makes you feel even more alone and isolated. I don’t want to tell anyone when I don’t understand things or when I forget where I parked my car, which happens a lot.”

And as if this character, that apparently wasn’t important enough to get a name, wasn’t relatable enough, they go on to say; “Sometimes I just wish I could fade away because it’s easier to be alone than it is to constantly be misunderstood by the people I love the most.”

At this point Jesús storms out of the support group room.

Both of his mums follow him to see him sitting on a bench crying.

I promise my crying watching this for the first time was much uglier to watch.

“That’s what we’re doing to you isn’t it.” Says one of his mums.

He says that he understands they don’t mean to and his mums apologise, admitting they’ve been handling the situation wrong.

“Every time you guys try to help me it makes me feel like I can’t do it or I’m bad or I’m broken or something.” Jesús explains his perspective.

Both of his mums proceed to hug him as they reassure him that he’s not broken and promise to stop making him feel like that.

I still get chills and tears whenever I watch that scene.

As if watching Jesús’ story hadn’t been chilling enough and the most accurate representation I’ve seen yet, the unnamed character voiced thoughts, feelings and experiences that clearly hit remarkably close to home for both Jesús and me.

This scene is the one that brought up an hour’s long conversation between me and my mum. We talked for hours about how I feel like that a lot of the time, what we could both do for me to not feel like that and we talked about how to help me with what and when so that I don’t feel so broken and so that I get to feel like I gave it a chance to whatever I’m trying to do.

That scene may forever be my favourite media representation of epilepsy.

I think just by talking about The Fosters alone I’ve talked about what representation means to me or what potential representation has. It means I can feel seen in a world that so easily overpowers the voices it doesn’t find valuable to its monetary value focused society. It means I have a trigger point to start a much-needed conversation about my own situations with those around me which is beyond helpful in a terrifying world with no manual or guide.

It also has the potential to show others who are yet to meet a person with epilepsy the realities, how to be of assistance rather than a hinderance, how to protect us when it counts. It has ability to share knowledge and the power to empower.

Honestly, at first point of progression, I want epilepsy representation to be epilepsy not just shock value seizures. That’s a big thing for me when I think about the way I want to see epilepsy in the media. I loathe shock value seizures as much as I possibly can, they simply add more fear and stigma to the diagnosis and they only hinder our progress in society. Secondly, I’d love to see more range in seizure types included. Hell, maybe even include characters that have more than one type of epilepsy/seizure. Ultimately though I just want to see a variety of life experiences, obviously some would be more accurate in certain types of media while others would be more dramatized or warped like in shows such as aforementioned Teen Wolf.

This brings me to the final point of my own ‘interview’ where I have to ask myself where I would like to see epilepsy represented more often?

As much I’d love to give the perfect answer of “everywhere”, which is still somewhat true, and while I just preached about how accurate to real-life experiences are so meaningful my answer is essentially the total opposite of this.

Comic-books. That’s my answer. That’s where I want to see epilepsy more often.

I’d love to see somebody use their creativity to make a respectful, badass, super-hero who somehow harnesses their disability into an ability or overcomes their disability to take the win of the day.

Currently one of my favourite comic characters is Oracle from D.C. who is paraplegic and must use a wheelchair, however her main purpose is to help the heroes to save the day rather than save it herself. With my dream of a character with epilepsy, I want them to be the one to kick ass and save the day, to show people of all backgrounds with epilepsy that they can be the hero of their own story while also letting them escape their own villains for just a moment.

This concludes the “Epilepsy Representation in Media” interview series. Thank you to all my guests for their incredibly valued time and answers. I hope all readers enjoyed this interview and find something to like in some part of this series.

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