Below is an interview taken place towards the end of March between myself and, Swimmer for Australian Paralypmic Dolphins team, Lakeisha (aka “Lucky”) Patterson. The 22 year old OAM holder managed to fit this interview with me in whilst also balancing swimming training, making sure she’s ready for whenever the next Paralympics may be, university responsibilities with studying a Bachelor of Communication, majoring in Digital Media, and being a fellow Ambassador for Epilepsy Queensland.
While this series was intended to be released on Purple Day, this is a health blog about somebody with health concerns therefore, my health got the better of me and it took until now for this to be set free into the world. We hope you still enjoy the following interview on the topic of “Epilepsy Representation in Media” and find something you connect with or learn from.
When asked how she would describe her connection with Epilepsy, Lakeisha can be quoted as saying:
“I have personally been living with Epilepsy for 17 years, after being diagnosed at the age of five with tonic-clonic [previously known as grand-mal] and absence seizures.”
With all forms of media considered, Lakeisha essentially said her experience with Epilepsy in media has not been good enough.
She finds that Epilepsy is most certainly under-represented in the media. She believes without accurate diversity of people from all minority groups, people with Epilepsy are continually left facing social stigmas and exclusion. We both believe that society needs to create a more inclusive and understanding social and physical environment.
To add to this, as someone that also has photosensitive triggers [defined as: flashing lights and fast-moving geometric patterns] at times, Lakeisha is aware of the fact that media channels rarely, if ever, include appropriate trigger or distress warnings on content prior to displaying potentially triggering content to audiences.
“As social media, and other mediums, are becoming increasingly popular and widespread, this issue is increasingly apparent.”
We both believe more education surrounding appropriate use of trigger warnings, contexts and phrases, towards media organisations, of all kinds, should be present and undertaken.
I was to ask what her brief general opinion on Epilepsy in the media is. However, with Lakeisha so easily dispelling the myth that “people with Epilepsy can’t be intelligent” and valuing her opportunity to share such perspectives on this topic, Lakeisha’s well thought out answer already answers this question; she’s not impressed and wants more for her community. An answer I think all of the community can agree with or relate to.
I think a question all media creators should think of, and most people in the Epilepsy community already know the answer to, is “do you think we see enough Epilepsy representation?”
Despite already thinking I knew the rough answer this would bring about, I put this question to Lakeisha anyway because this series is about using my media platforms to share perspectives from different members of our community.
Also, as she she’s shown us in the pool, one should never underestimate “Lucky” Patterson.
“Epilepsy representation is vital to ensuring [general] community understanding. Unfortunately, I believe we do not see enough representation of Epilepsy in daily life due to the fact that it can be seen as an “invisible disability” at times.”
Lakeisha used the statistic a lot of people are using this Purple Month, that 1 in 10 people live with Epilepsy, to point out that you may therefore pass somebody with Epilepsy in the street and have absolutely no idea what they are facing. She believes this leads to the general public assuming that “Epilepsy is not that bad and totally manageable – which is not the case for many people.”
And she’s not wrong at all! The statistic used is globally fact checked and authenticated and that is a common assumption despite two thirds of people with Epilepsy, so the vast majority, not knowing the cause of their Epilepsy or knowing how to manage it due to the limited knowledge on Epilepsy or limited medication options that can’t necessarily be used as specific “targeted therapy” as most people don’t know the cause of their Epilepsy.
Thankfully great, non-invasive studies are taking place all over the world, including right here in mine and Lakeisha’s home state of Queensland, to fix this so that we can find more causes more easily and therefore find more target therapies.
This is why Lakeisha believes representation in media is so important! It’s up to society as a whole to use this as a way to spread the message about what epilepsy is and how we can best support individuals and families.
“Adequate representation also allows people living with epilepsy know that they are not alone in their battle and feel supported and included.”
There’s lots of inaccurate assumptions which lead to a poor portrayal of the condition and discriminatory stigma towards people living with epilepsy due to there being a lot of questions associated to epilepsy from others not aware of the condition is how Lakeisha answered the question about whether or not she thinks we see accurate representation in media.
“Assumptions, or myths you may call it, such as: epilepsy is contagious; people with epilepsy aren’t as smart as others without; you can’t live a ‘normal’ life (whatever normal means anyway) etc. These are just a few examples but illustrate how many people within the broader community have little understanding on epilepsy.”
Lakeisha believes that this is the reason, we all need to come together and help educate, advocate and bring awareness to society about epilepsy, what it is and how you can help.
Unfortunately, other than in educational social media posts from individuals (such as myself) or organisations, Lakeisha isn’t sure she’s ever seen accurate portrayal of epilepsy in any media.
When I asked Lakeisha if she thinks she’s seen herself represented in media, her answer was disappointing but not surprising. When Lakeisha mentioned that the stereotype of epilepsy in media is that everyone with epilepsy has tonic-clonic seizures (previously known as grand-mal, involving unconsciousness and muscle convulsions) and seems to be the default when epilepsy is represented in media.
I couldn’t deny that I had observed the same go to and have in some way both benefitted from it, having tonic-clonic epileptic seizures myself, and been disadvantaged by it, as it perpetuates false stereotypes and often gives people false information about my disease including dangerous first aid suggestions, while somebody who experiences epileptic seizures that don’t even remotely present the same way could only be disadvantaged by representation that excludes them.
Lakeisha herself relates to this sentiment in some sort of way as well, telling me that this is, again, where education into what epilepsy is and what the different types are can help create a greater understanding, so equal representation is delivered. Because whilst she does have the “default” seizure type and sees it portrayed in media at times, although she doesn’t state if it was portrayed correctly, accurately, or positively, there are many varying forms of epilepsy which certainly are under-represented.
When asked, what does representation mean to you, Lakeisha couldn’t have said it better. She stated that, to her, representation is using different mediums such as written, visual, auditory media and so forth to depict a certain thing, idea, person, cause, condition, etc.
“Representation is an incredibly powerful form of awareness to further promote greater understanding, and evoke the sense of belonging and acceptance.”
There may be a myth that people with epilepsy aren’t as intelligent as those without, but I believe Lakeisha’s powerful statement above proves that wrong. She doesn’t stop there though. After being asked about what representation has the power to do, she drops another one liner.
“Representation has the potential to make everybody feel included and valued no matter their circumstance.”
Lakeisha believes representation is powerful and can create a more understanding and a more inclusive and accessible world by reflecting the reality of many people from varying backgrounds, conveying their messages in a more abstract way.
In journalistic media it’s said, that while you may get a full interview, you only get one chance at a real question. I’ve noticed that those questions are typically the loaded question that everyone, if not just the interviewer, are incredibly curious about and they end the interview.
With some of the loaded questions I’ve already asked, some would say everything until now have been multiple attempts of getting my one question. However, with the curiosity fuelled questions about to follow, some might just say these light-hearted questions are an attempt at getting my real question not once but twice.
You may decide for yourself but, either way, the following was my way of ending the interview with my own curiosity while staying on track with the general theme of this whole series.
I was curious what kind of storylines regarding epilepsy in media Lakeisha would like to see with examples from “how we talk about people with epilepsy in news reports” to “plot lines of characters with epilepsy in TV shows.” Anything where epilepsy meets a form of media. I also didn’t limit the possibilities for her. All she wants is:
“Diversity in the range and forms of epilepsy, as well as showcasing the possibilities and opportunities you can still achieve despite living with epilepsy, rather than the negatives.”
I might have overloaded her with the next and final question, but she had the perfect answer.
I asked, thinking now about all types of media including news,biographies, fictional books, biopic films, fictional films, comic books, various social media platforms, etc. (for just some examples), where would you like to see epilepsy represented more often? Her answer was a simple one.
“All of the above!”
Thank you to Lakeisha Patterson for her valued time and intriguing answers. I hope all readers enjoyed this interview and find something to like in the other instalments in this series.