Below is an interview taken place towards the end of March between myself and blogger Danica Quabba from The Medicalised Mumma. The young mother managed to fit this interview with me in whilst also balancing working as a nurse, university responsibilities, fundraising for Epilepsy Queensland with a Ladies Night and taking care of two adorable young girls.
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.
To start, let me give a brief explanation of Danica’s connection to epilepsy. Danica is the mum of two beautiful children, including her oldest: a four-year-old little girl who had her first seizure at 3 days old. Abigail has tonic-clonic, absence, focal, atonic, and myoclonic seizures. A lot for a little girl to handle and a lot for her parents to manage.
Abigail is also a part of the 20-30%, or rather the 1 in 5, of autistics who also have epilepsy. This is a common intersection between the two conditions and yet I feel it’s worth mentioning that that specific “storyline” does not make it into any media except the self-advocating, or guardian-advocation, social media communities.
Danica has had little experience with epilepsy portrayal in the media.
One of her first true experiences came from a major form of media but not necessarily the one people think of for medical representation, social media. These encounters with social media came from Epilepsy Queensland. Other than that, the only other experience she has of epilepsy in the media is through TV shows such as Grey’s Anatomy.
Her general opinion on epilepsy in the media was a sad but familiar tale. Stop reading here, take a guess at what you’re going to read next and see if you win. Danica sincerely believes that epilepsy is severely underrepresented in all media and think it’s definitely portrayed inaccurately from the little she has seen. What do you win now, you mask ask? Some perspective if you didn’t have it already.
Danica certainly thinks that we don’t see enough epilepsy representation in media.
“It would be a lot more helpful to see epilepsy more in the media to help young children especially identify as leading a normal life.”
When asked if we see epilepsy portrayed accurately in media to day she gave a very simple answer no I don’t before going on to give a more detailed but very specific answer.
“Yes the seizure is portrayed but what they never show is the post seizure side effects, the constant stream of medications, appointments and the emotional and physical struggle of not only the person diagnosed but the family supporting that person also.”
When asked where she’d previously seen epilepsy accurately portrayed, Danica could give as specific an answer unfortunately. Media presence from Epilepsy Queensland and some blog pages she follows on Instagram was all she could give me. This common answer says so little but screams so much! We don’t have much and we need to do more!
Obviously when talking about representation in media I had to question if Danica saw herself or her daughter with epilepsy represented in media. She gave a reasonable answer but one that causes disappointment in those in charge of the media we create and see.
Her daughter, Abigail, has “multifocal epilepsy”. This means each of Abigail’s seizures can be different and, as Danica explains,
“majority of the time does not cause her to “shake”.”
She goes on to explain that sometimes it can be as simple as a visual disturbance, which can be over in a few seconds, or it can be as catastrophic as a focal status seizure, which means emergency medications need to be administered and somebody must call an ambulance.
You’ll notice Danica mentioned that Abigail does not “shake” as it was put, referencing the likes of tonic-clonic seizures which are commonly added to TV shows and movies for shock factor, therefore she does not get representation. Also, if you’re to go back and read the response again, ask yourself where in all that Danica said did she once even imply that there’s as much as poor representation of herself, as the parent and caregiver to a child with epilepsy, let alone good representation.
This series is to cover two things;
- The topic of Epilepsy Representation in Media,
- The perspectives of different members of our community,
through my own media platforms.
I asked Danica to be interviewed for this series as she is a mother of a child with epilepsy which that alone can be broken down into the two different perspectives of “a mother of someone with epilepsy”, the person who has to protect somebody from the medias negative takes and provide positive input, and of “somebody who has to be a voice for, quite specifically, a child with epilepsy”, as children are vulnerable and impressionable because they are just a child. A child’s perspective of the world is still growing and being bombarded with new information every day, including that of the media which needs to be monitored by their guardians. And while society deems epilepsy and seizures as a whole to be “outside of the norm”, Danica’s child’s diagnosis is also “out of the norm” for how society views epilepsy.
Danica is also a nurse which offers another unique point of view. She’s more than that though; she’s the mother of an abled child, she’s a wife, she’s a university student, she’s a daughter, she’s a friend and so much more and yet she must balance all of this while taking care of Abigail and Abigail’s high needs. This gives her such a unique and valuable perspective.
When I later asked about what representation means to Danica she said:
“Using the input of people who actually live with the condition to represent the population.”
I believe I’m using input from a handpicked, valued member of our community and from somebody who speaks for their daughter when their daughter is yet to be able to speak for herself. This enriches and empowers our culture and helps us use our own community to speak up for our community. #NothingAboutUsWithoutUs will always be put in place in my community at Purple Adventures.
Danica also explains that, to her, representation mean inclusivity. It also shows the world that the associations society has made between the word epilepsy and the diagnosis are incorrect. Representation also means that you’re showing the world that there is “more to a person’s diagnosis than “shaking”.” Referencing again that there is a stereotype in the world that all seizures are convulsive or tonic-clonic’s. Showing what as many individuals and families go through is important to Danica.
“Representation has the ability to completely upheave any false beliefs people have about Epilepsy and to provide individuals with epilepsy to relate to media portrayals and feel included.”
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 a show that covers people’s journeys with epilepsy, including hard talks about things such as treatments and how to cope with the diagnosis on a family level.
I might have overloaded her with the next and final question.
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 that I think we can all agree with.
“Definitely on social media platforms but also medical TV shows.”
Thank you to Danica from The Medicalised Mumma 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.