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.

Epilepsy Representation in Media; Part 2 – Peter Jones

Below is an interview taken place towards the end of March between myself and, my very special very own Nurse Practitioner, Peter Jones. The busy physician managed to fit this interview with me in early in the morning on his first day off in who knows how long. We were supposed to conduct this interview earlier but, as I said, he’s a very busy man and sometimes some things don’t work out the way we want them to.

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.

Pete is a nurse practitioner specialising in epilepsy, the first of his kind here in Queensland, Australia, and he works in both the public and private sectors.

When asked what his experience with epilepsy in the media has been like he gave a refreshing answer, saying it was fairly positive.

“It helps when iconic individuals or those in the media spotlight are intimately involved either as diagnosed or as champions.”

Pete’s general opinion on epilepsy in the media is also pretty good to date. As we seem to always have good local coverage of events such as Purple Day, Pete thinks information is shared by the media at the right time. He also believes there is a good global awareness through all forms of media, but stigma of diagnosis is still there and more exposure would always be better.

When asked about the frequency of epilepsy representation, Pete pushed the stance of needing to continue to fight the negative implications of the diagnosis.

He also believes we mostly see epilepsy portrayed accurately but the gaps are why we need solid ambassadors.

Television, good press, blogs, and Epilepsy Queensland were listed by Pete as doing a fantastic job as portraying epilepsy accurately.

Everyone interviewed was asked if, when it comes to epilepsy, they think that they see themselves or their loved one represented in media? Pete said he doesn’t need to be represented and that he’s just the lucky one who gets to work in a job he loves.

Personally, I’d argue that as dealing with medical physicians is an important part of the epilepsy journey and, while my own experiences with Pete have always been fantastic, dealing with different physicians can be hard due to medical negligence. This crucial part of our journey needs to be shown, with both the ups and the downs, so I believe showing physicians who love their job, know what they’re doing, are kind and most importantly caring is an integral part of representing epilepsy accurately.

While Pete was unsure of what representation meant to him he acknowledged that it has the potential to expand accurate awareness.

In interests of storylines regarding epilepsy in media Pete noted that he’d just like people to look at the statistics of occurrence before going to work as to normalise the disease.

Any media that promotes a fair go for those with epilepsy works for me.”

Regarding the different types of media, where would you like to see epilepsy represented more often? 

“EVERYWHERE!!!!”

Thank you to Peter Jones for his valued time and unique answers. I hope all readers enjoyed this interview and find something to like in the other installments in this series.

Epilepsy Representation in Media; Part 1 – Danica Quabba

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;

  1. The topic of Epilepsy Representation in Media,
  2. 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.

#1in10Challenge – Day 2

It’s already well known competitive sports has an unhealthy culture on many levels, watch Athlete A on Netflix if you need a prime example, and we put pressure and value on people’s achievements rather than on the person themselves. I was once a competitive athlete, so I know this all firsthand. This is so dangerous and unhealthy but how does this relate to epilepsy you may ask?

Athletes set goals and their vision on that goal almost becomes tunnel vision. They look at what they need to do to be the best and achieve that goal they’ve set and that’s all they look at. So, when epilepsy comes flying in from the side vision that they don’t have it throws them for a spin. Some handle this better than others.

My mum was always supportive of my sporting career but she also kept me grounded and focused on other things so when my health went downhill and put my career on hold, I was devastated but it wasn’t the end of my world. Don’t get me wrong, I still feel jealousy every time I see a former team mate compete or win or somehow move forward in their career and I’m itching to be up there on a podium with them but I also know my life is worth more than just that.

Not everybody has the same mother that I do. Most athletes put their all into their goal and when epilepsy comes flying in for a surprise visit it genuinely feels like the end of their world. Especially if their education on epilepsy is poor.

I know my epilepsy education and I know my career is on hold. Once my epilepsy is managed, which is possible, I get to start working on my career again which gave me drive to keep working on managing my disease.

Some don’t know any better and believe their career is over, not even their career has changed paths, but that epilepsy has completely obliterated it. Devastation rightfully kicks in. How they handle that devastation is what matters.

While some just box up their trophies and medals and completely turn their back on their sport because that’s how they cope some don’t cope at all and end not only their careers but their lives as well.

While sporting culture has changes it needs to make, such as allowing athletes to widen their view and put their values in multiple areas, so does the medical system. When somebody is diagnosed with epilepsy, they need to start seeing a psychologist straight away for help processing what they’re going through and how they’re feeling. I felt devastated about my career holt but had to navigate that myself like we all do. I’m one of the lucky ones who survived that part of my life. If we were all given the aid we need to navigate such a distraught and overwhelming time in our lives more of us would be the lucky ones who survive.

To all my siblings that have lost their lives because the systems failed them when epilepsy knocked them down, I’m sorry. We must do better and for you I will.

#1in10Challenge – Day 1

Relationships of any kind take a hit when somebody involved is diagnosed with epilepsy.

Friends don’t know how to behave around you anymore, family don’t know how to support you and partners don’t know if they want to be in a romantic relationship, let alone a sexual one, with a disabled person.

You may not notice these things at first but it’s almost inevitable that at some point you’ll fall into one of these categories if you have epilepsy.

But that’s okay because better people come along and lift you up.

To help that happen here are five tips to help make relationships work when somebody involved has epilepsy.

  1. Be patient. This goes both ways, sometimes you’ll need to be patient after a seizure and sometimes you’ll need to be patient while they process the seizure.
  2. Be gentle. Again, this goes both ways as epilepsy takes a tole on the one with it AND their loved ones.
  3. Listen to the person with epilepsy’s boundaries.
  4. Understand the persons limits in social settings
  5. Know what to do if something happens

Breaking Down Epilepsy Misconceptions

  1. There are over 40 types of seizures and over 100 syndromes connected to epileptic seizures. Not all seizures are the same. Not all are convulsive (falling/shaking), some are extremely easy to miss as they appear as though the person with epilepsy is just daydreaming.
  2. Despite ancient Romans going as far as spitting on the chests of epileptic people to avoid catching the disorder, it’s not actually contagious. You can’t catch it from somebody else, it’s either something you’re born with and it presents itself when its ready or you sustain a traumatic brain injury (TBI) through an accident or secondary disease which leads to epilepsy.
  3. Epilepsy is NOT a mental illness but a confirmed neurological condition. Electroencephalography (EEG) is a monitoring method to record electrical activity of the brain. An EEG can pick up a seizure or blips of seizure activity that’s not intense enough to cause a seizure. If anxiety or depression showed up on EEG’s mine would always be going haywire but they don’t.
  4. One of my Instagram followers told me that “People think I’ll hit the deck if I see a flashing light” which is not one of their triggers. In fact photosensitivity epilepsy is one of the rarer kinds of epilepsy. With that being said, you don’t know somebody’s trigger(s) unless you ask so air on the side of caution, ask, listen and respect boundaries. Also remember photosensitivity is also a trigger for a few other conditions so it’s still a good idea to be cautious when playing around with that kind of technology.
  5. Another misconception is that epilepsy is an illness or disorder, it’s not but it is a neurological condition, neuro disease or disability.

Talking to Disabled People About Disabilities

I, and many other ill and disabled people, have been asked invasive questions by total strangers on multiple occasions. It’s ableist and uncomfortable to say the least.

 

But what about friends and family? How can they ask about our conditions without falling into the same category as those offensive strangers? Perhaps how can strangers be less offensive and invasive.

 

Step one is showing from the start that you have respect for their option to decline answering. Just because they know you doesn’t mean they’re ready to share every little detail with you. This can be done by opening the conversation with “I’m going to ask you a question about your health, but I respect that you may not want to answer. I take full accountability if I overstep here.”

 

Try to know what you can before asking. For example, I’m epileptic so if you want to know what kind of seizure I have try to know the common types so you can ask “do you have tonic-clonic seizures or absence? What does that mean?”

Everyone is different when it comes to how open they are to questions and educating so self-education, even the tiniest bit, can really help and shows you genuinely want to learn for the right reasons. This will make the person more likely to open up rather than take the approach of making you educate yourself entirely.

 

Don’t start with an apology. “Sorry I don’t know much but can you please explain [insert topic].” There’s no need. We don’t expect you to know everything, sometimes doctors don’t know everything, so we certainly don’t expect you to know everything.

Instead try “hopefully this isn’t too much to answer but or can you tell me where I can find out more.”

 

Remember it’s not our responsibility to educate you on everything.

 

Be confident but not overconfident. If you’re shy and stammering because you’re scared to ask, you’re probably going to frustrate the patient. Come in overconfident and you’re going to annoy the person in question. You’re just talking to a fellow human so treat them as such.

 

Sometimes one of my friends who asks a lot of questions will come in shy and I just want him to spit it out and start to worry it’s going to be offensive but most of the time he asks me the same way he asks me what I want for lunch and it makes it a comfortable environment for the conversation which makes it much easier to answer his questions. What also helps is he has a lot of patience as I try to find the right way to answer the question.

For example, he frustrated me by asking me to lift each leg one at a time and stared at me. Big no. This made me frustrated and uncomfortable. Turns out he wanted to ask how I can move (albeit with limited motion) my leg with functional limb weakness. Once I had the question, I could actually have a conversation, without being a science experiment, and give him the answer he was looking for. However, it wasn’t until the next day that I had the perfect answer which was okay with him because he genuinely wanted to know.

In case you’re now also wondering how it works; the wires that tell me my leg is there, that I can feel it and that it has strength to stand on are mis-wired so the messages from my brain aren’t getting through but weak signals from the wires telling to move it occasionally get through.

 

This one is especially important when talking to strangers or friends/family that have only just been diagnosed or started new treatment; “Please tell me to leave/change topic if this is too much” or “I know somebody else who appears to be in a similar situation, do you mind if I ask a question.”

 

I leave you with the most important note of all, don’t make assumptions or ask blunt questions like “what’s wrong with your face?”. This is incredibly disrespectful and falls under ableist micro-aggressions. I’ve had plenty of people, friends, family, acquaintances and strangers ask blunt questions (“what’s wrong with you now?” “why do you look like that” “what did you do this time?” “why are you so skinny?” “why have you gained so much weight?” “why aren’t you eating?” etc.) and it often triggers me to go non-verbal with my autism because I feel so disrespected and unsafe.

 

Be kind, open, respectful and ready to look up resources given to you and you should be just fine.

The Community History of: Epilepsy

Today we’re having a history lesson. I’m super passionate about the history of my people in all aspects, even if it hasn’t been very well recorded over the years due to the shame the abled world has pushed onto us.

 

The point of this history lesson is to stop people from laughing at the expense of those with epilepsy.

 

Epilepsy has been affecting people at least since the beginning of recorded history.

 

Ancient history believed epilepsy to be a spiritual condition.

The world’s oldest description of an epileptic seizure from the language use by ancient Mesopotamia, Akkadian, text and was written around 2000 B.C. The person described in the text was diagnosed as being under the influence of a moon God and underwent an exorcism.

 

Ancient Greeks saw epilepsy as a form of spiritual possession also but associated it with genius and divine instead. Epilepsy appears throughout Greek Mythology and is also commonly associated with the moon.

 

Ancient Rome didn’t share pottery with people with epilepsy in an attempt to avoid catching epilepsy. People would also spit on the chests of people with epilepsy to avoid being affected as they believed epilepsy was contagious.

 

In 1780 B.C., The Code of Hammurabi lists that slaves may be returned for if the slave were to have seizures in the first three months of ownership. The code also dictates that a person with epilepsy couldn’t marry or testify in court.

 

During the fifth century B.C. of classical Greek a physician, Hippocrates, rejected the idea of epilepsy being a spiritual related disease. He proposed that epilepsy was not divine but a medically treatable problem. Instead of referring to it as the ‘sacred disease’, as was common practice at the time, he decided to call it the ‘great disease’ instead. This decision gave rise to the modern but now outdated term ‘grand mal’ for tonic-clonic seizures. Despite his work of great detail, his view was not accepted at the time and people continued believing epilepsy was of a spiritual, usually negative, nature.

 

Evil spirits were blamed in majority of the world until at least the 17th century.

 

In the 18th and early 19th centuries people with epilepsy were labelled as insane and locked in asylums with incredibly poor treatment. Around 1825 Jean-Martin Charcot found people with epilepsy side by side with the criminally insane in Pitié-Salpêtrière University Hospital, the birthplace of modern neurology. Until the late 1800’s, people with epilepsy were often incarcerated as ‘criminally insane’ despite some stigma easing in Europe and North America due to beliefs shifting from psychiatry to neurology.

 

In 1956, 18 US states provided for the sterilisation of people with epilepsy on eugenic grounds.

 

Organisations like Epilepsy Queensland Inc. were only founded in 1969. The Kemp family were inspired to found EQI due to their son with epilepsy being fired repeatedly on discriminatory grounds. This discrimination was commonplace with no anti-discrimination laws in place.

 

Until the 1970’s it was still legal in the United States to deny people with epilepsy entry to public places such as restaurants, theatres, recreational centres, etc.

 

In the United Kingdom, a law prohibiting people with epilepsy from marrying at all was repealed in 1970.

Before 1971 in the UK, epilepsy was grounds for marriage annulment despite the common vow “in sickness and in health”. To this day in India and China, epilepsy can justify denial of marriage and it primarily targets women in a further act of discrimination.

People with epilepsy in the United States were forbidden to marry in 17 states until 1980.

 

In a 1987 ruling, the United States Supreme Court ruled that “a review of the history of epilepsy provides a salient example that fear, rather than the handicap itself, is the major impetus for discrimination against the people with handicaps.”

 

As late as the second half of the 20th century, in Tanzania and parts of Africa, epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed to be contagious.

 

Today stigma can interfere with timely access to healthcare, early diagnosis, which is extremely important, and treatment.

The negative perceptions of epilepsy among medical professionals and structural discrimination resulting from stigma can impair the service utilization, particularly when there is scarcity of resources for treatment, rehabilitation and research.

In south India, for instance, parents of children with epilepsy tended to isolate themselves from others in their social network.

Around the world a young child with epilepsy may be refused continued access to education because social attitudes in educational institutions are prejudicial and discriminatory. I personally was denied access to continued education during my time in hospital and home care while in high school.

 

While some countries have laws in place where people with epilepsy can obtain a licence after a certain period, typically a year, of being seizure free, people of India simply can’t get a licence.

 

Insurance cover to people with epilepsy in India are issued at disadvantageous rate and are denied benefits in the event of accidents and/or death occurring due to epilepsy.

 

People with epilepsy find it harder to find a stable job as uneducated employers will often find a way around anti-discrimination laws that may be in place, some countries don’t even have these laws, to not employ the potential worker who is fully qualified for the job. If they find a job they may be refused advancement in their role or be treated differently by their employer and peers for having epilepsy.

 

Another obstacle faced worldwide, especially in rural areas, is lack of access to comprehensive epilepsy centres. In 2017 somebody presenting to a rural area hospital was left by doctors and nurses to experience seizures a publicly accessible space outside of the hospital because they believed she was faking for attention when, in reality, they were not accurately educated.

In this same rural area I was personally told that I shouldn’t be an activist because people with epilepsy live perfectly fine lives, so there was no need for what I do.

 

Todays media is just as harmful as the real world.

 

While Grey’s Anatomy is a progressive show that educates as its team learns, in 2005 the show used terms like “fish out of water” to describe somebody having a seizure. This is harmful and hurtful language that is dangerous to use in major mainstream media in modern times.

 

Even more recently a study of Twitter with authors from Dalhousie University in Canada found that of 10,662 tweets containing the word “seizure” collected during a single week in April of 2011, 41% were considered to be derogatory in nature.

 

People still video people having seizures unpermitted to mock the people being recorded. People with epilepsy are constantly the butt of generic, offensive, overly used jokes that have stuck around years upon years.

 

In 2019 after actor, dancer and philanthropist Cameron Boyce died, people acknowledged his death by posting videos of them poorly imitating seizures as the #CameronBoyceChallenge.

 

In 2020 the #SeizureChallenge rose to fame in mainstream media when people used social media platform TikTok to post videos of themselves faking seizures. In the background of the majority of these videos was a song from musician Juice Wrld who died after a seizure that was brought on from drug use. His death made headlines worldwide and this was people’s way of acknowledging that during their already offensive ‘challenge’.

 

Negative stereotypes of people with epilepsy have been so ingrained into society that many with epilepsy accept them. We also sit by silently when things like these TikTok videos arise. I hope by speaking about our own experiences and taking ownership and pride of our history we can change these habits and feel empowered to make change, even if the only change we make is amongst our friends and family.