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So I made a video about those things I've been thinking about related to Somerton's recent Response Video.

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It's also incredibly difficult to take a company to court if they are discriminating against you, especially if they don't have a HR Department you can take it to first. And almost impossible if you can't afford a lawyer. So yes, I can absolutely believe that Somerton would be let go. i myself, have faced workplace discrimination because of my disability. Where I was told I was "not a team player" because of the procedures I needed to put into place to prevent seizures. My attempt to BE a "Team player" resulted in my seizure count trippling.

Beyond anecdotal evidence, I would like to point out that workplace discrimination is illegal in the UK too. And yet the office of national statistics show that only 34% of people who have epilepsy as their primary condition are in employment.

So for once, yes, there is plenty of site able evidence to back up Somerton's claims. As justepilepsy has said, we cannot start to question disabled people about their workplace experiences, nor fall for the ongoing rhetoric that if something is illegal than it never happens. The law is often just a slip of paper, and as any history student will tell you: De Jure change does not lead to De Facto change.

Sommerton's attempt to blame his disabilty for why he chose to take claim for the work of other people from minorities, to spread lies and falsehoods, and bully people into silence is despicable. He is trying to throw all other disabled people, specifically those with memory issues, under the bus with him.

Do not let him do so, on the pretense of social justice.

Okay uhm - I need to say this because I am noticing this a bit in the responses to Somerton's "Apology" video. Do people really think, just because ableism in the workplace is forbidden, that workplaces don't discriminate?

Even if insurance stuff covers your health issues, I won't put it past an employer to let you go with the made up argument it doesn't. Because non-epileptic people are generally very uncomfortable with seeing seizure activity and some of them will prioritize their comfort over sticking to anti-discrimination laws.

I think Somerton's video is full of BS, but I am even more uncomfortable with how happy people are to dismiss Somerton's medical history/symptoms, just so they can argue against him. As if people with disabilities can be absolved for being dicks by accepting their stated medical and discrimination history.

When you don't even have to do so to point out the harm Somerton's logic does?

I mean - I think it's warranted to question James' statements because of his complicated relationship with telling the truth, but I am just kind of bothered by how people argue "this could not have happened because laws/policies" No. Let it have happened. It makes his apology worse if you choose to believe him on this, trust me.

If our response to disabled people acting terrible (stealing other people's material and presenting it as your own), is to accuse said disabled people of lying about their symptoms and diagnosis, I think we are missing the point and problem.

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Disability Discrimination in Anime Dubbing

Disabled Characters are becoming more and more common in manga in recent years, with releases such as “A Sign of Affection”, “Ranking of Kings”, and “Josee, and the Tiger and the Fish”, all getting Anime Adaptations! However, only one of these series features a Disabled actor in the lead role. That being Emily Fajardo in Ranking of Kings (directed by Caitlin Glass) as Bojji. Emily has (understandably) undisclosed disabilities, and has said how ecstatic and proud they were to get to play a disabled role - a sense of triumph and emotion I do not wish to take away from them. However their disabilities do not match those of the character they play. Bojji is non verbal and deaf, Emily is not. 

Yet this is a vast improvement upon the continuing apparent refusal to find disabled actors. There is a solidarity found amongst disabled people, and whilst our experiences in this world are different, we have a shared history. A shared understanding of what it is like to live in a world that rejects you. Be that the epileptic teen who can't go to the cinema with their friends, or the wheelchair-using adult unable to find a job because nobody sees their value. 

The only time I can think of where a Disabled Anime Character has been voiced by someone with a matching Disability was Lexi Marman Cowden in “A Silent Voice” as Shoko. Lexi’s performance was absolutely incredible, heartfelt, and true in every sense. Comparing her performance to that of her able bodied Japanese counterpart (Saori Hayami) you can tell that Lexi has real life experience to draw on, her emotions feel real. It's obvious that Lexi has been through what Shoko has. It's why, despite its flaws as a story, I still consider “A Silent Voice” to be one of the best ever English Dubs. They bought something new to the series that the Japanese team didn't. Stephanie Sheh and her colleagues at NYAV Post understood the need to have stories told by the people they're meant to represent - a sentiment that has bled through into their other work such as casting Trans Actress Shakina Nayfack as Hana in “Tokyo Godfathers”. 

And whilst this wonderful dedication to accurate casting in terms of gender, racial, and sexual minorities is being reflected throughout the industry – for example the Majority POC Dub of “Horimiya” and the Majority Queer Dub of “Given” – it is simply not being reflected with regards to Disabled People who are once again left out in the cold. It also feels incredibly hypocritical and hurtful to see people criticise non-accurate casting within some minorities, and completely ignore it when disabled people are involved. 

An example of this would be “Josee, the Tiger, and the Fish”. Whilst it is to be celebrated that there was a Majority POC cast in the film, director Jerry Jewell still chose to cast an able bodied actress in the titular role of Josee, a wheelchair user. Suzie Yeung’s performance very much felt like that of an Able-bodied person mimicking a disabled person. Whereas Lexi had real life experience to draw upon, Suzie was making it up as she went along. This was especially clear to me when Josee was forced to self-hoist for the first time. 

Suzie played it as a tragic moment of upset frustration and proof that Josee needed help but was too stubborn to ask. Meanwhile, my own experience as a person with Myasthenia Gravis was that the first time I collapsed and couldn't stand up on my own, being able to clamber from the floor to the sofa was a moment of personal triumph. This is an emotion I have heard other disabled people talk about. It's not proof of helplessness, it's evidence that you do have strength, power, and independence. Yes, part of this was probably just the way the film was made, but I still felt that a disabled actor with mobility issues would have understood the nuances far better, and would have made for a better film. 

At the time, I said I would only forgive Director Jerry Jewell for casting an Ablebodied Actress in a Disabled Role, if he hired a Disabled Actress for an Able-bodied role… which he did later the following year when he cast the wonderful Risa Mei (who has dwarfism) as the protagonist in “My Senpai is Annoying”. Whilst this his was not Risa’s first role at Funimation (now Crunchyroll) having played Shirley/Rum in “Shadow’s House” and Nadila in “Kakushigoto”, it was her first lead role. The anime itself didn't have the best reception, however Risa has continued to be cast in more and more roles across the Anime and Gaming World including more Popular Series like “My Dress Up Darling”, “Sing a Bit of Harmony”, and the upcoming “Sand Land” Video Game by Dragon Ball Creator Akira Toriyama. 

I had hoped that perhaps this would lead to more disabled actors breaking through into the industry! That Lexi had proven, without a shadow of a doubt, that Deaf people could do Dubbing and do it better than Hearing People! That Risa had proved that there are thousands of talented disabled actors out there if you were just willing to look! Yet with the announcement of Lara Woodhull as Yuki in “A Sign of Affection” it is clear to me that Voice Over still has a long way to go with regards to hiring disabled people. Which is a real shame, since you would think that the success of remote recording during the ongoing pandemic would allow for more disabled (and especially immunocompromised) actors getting cast. 

Many would argue that I am perhaps being hypocritical here. If I am saying that disabled voice actors can play able-bodied roles, then why can’t able-bodied people play disabled roles? This is perhaps a fair question, but from my perspective, disabled people are fully aware of what it is like to be able-bodied. Many of us are already forced to act as if we are, or have had to experience going from being able-bodied to being disabled. So where as disabled people absolutely have the life experience needed to play non-disabled roles, able-bodied people do not. 

This isn't to say that there has never been any examples of non-disabled people playing disabled characters well! Eun-bin Park as Woo Young-Woo in the Korean Courtroom Drama “Extraordinary Attorney Woo” springs to mind. Her performance as the Autistic Woo was incredibly well researched and prepared for. She took great care to talk to real-life autistic people to play the role as authentically as possible. However, this is an exception, not a rule. The majority of able-bodied actors are not willing to put in the same level of time and effort that Eun-bin has.  Equally, Disabled people should still be able to speak for themselves, and not have able-bodied people control the entire narrative. 

An argument is often made that Disabled People do not have enough experience to play lead roles. However, how are actors meant to get this experience if they are not even being cast to play themselves? And surely Lexi once again stands as an example of how someone with no experience in Voice Acting or Dubbing can give award worthy performances?

It is perhaps especially sad that no Hard of Hearing actors have been cast in “A Sign of Affection”, since it would have been the perfect dub to start out on. Due to trauma related to how her voice sounds to others, Yuki has an entirely internalised monologue. This means that the actor playing her doesn't need to match any mouth flaps. This makes things much easier for those new to dubbing, as it allows them to focus on just their acting rather than the more technical side of things. 

Where as some might argue that Yuki’s internal monologue means that it would be ridiculous to cast a person with a Deaf Accent. Ignoring the obvious fact that Yuki may very well have a Deaf Accent in her internal monologue, and that it's down to Hearing People to learn to understand those accents, many d/Deaf people do not even have that accent! Not all d/Deaf folks are born without hearing, many lose it later in life and so maintain their original accents. Equally, not all d/Deaf people are completely without hearing, hence the term “Hard of Hearing”. They might still have full hearing in one ear, or have cochlear implants to improve their overall hearing before it gets to the point of complete loss. Not to mention the increasing effectiveness of regular hearing aids. Whilst naturally a person who has partial hearing is going to have a different lived experience to someone who was born without hearing like Yuki, they would still have far more in common with the character than an Able-bodied actor would. 

It would simply appear that Dub Directors like Jason Lord are simply not willing to put the effort in to find Disabled Talent. But we are out there! We’re working hard and making moves. We’re doing everything that able bodied actors are doing, backwards and with wheels. There are over 350,000 d/Deaf people living in Texas, I am certain at least one of them has a passion and talent for acting. 

So please. Let the Blind Samurai be voiced by a Visually Impaired Person. Let the Robot Armed Star Fighter be played by a person with a prosthetic. Let the sweet deaf girl who is falling in love and discovering the world for the first time through her own hard work and the support of her friends as it becomes accessible to her for the first time, be played by someone who knows exactly what that feels like. 

I do not want to have to write another post like this when the next series with a Disabled Protagonist is announced. I want to be allowed to join in with your celebrations, and not to left looking in through the window as I sit on my scooter in the cold wet rain. Once again refused entry to the party because of the elaborate staircase built by able-bodied people.

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It was a little interesting watching the latest episode of Doctor Who as both a mobility scooter user AND an Epileptic.

Because even though it was very ham-fisted, it made me happy to see the TARDIS with a wheelchair ramp, and to have discrimination against ambulatory users shown as something disgusting and vile.

However, there's always something about brain waves that I will naturally always associate with epileptic people. Seizures are caused by/are indicated by rapid spikes in brain waves. We then saw that the Toymaker made everyone unbelievably angry that it threatened the end of the world. And on the one hand, it's amusing to think of us being immune to these actions in a Hulk Style "I'm always angry" scenario. However, it's difficult to see it and not get a gut feeling of seizures being a sign of possession, something that has been one of the harmful beliefs that has resulted in our murders for countless generations.

So whilst objectively I think that it was just RTD forgetting that we exist, and being ignorant to the history of Epilepsy... it still hurts. It's still something that he did. And there's no really going back from that.

Not until he repents again, and introduces an epileptic character to the series! Something that would mean an awful lot to me. And hey! You could give them a Z-Dex to control their seizures, even.

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So much of it is just "listening to my body" and using that as a sign of what I should or should not do. Including just waking up in the morning and going "No. Not today."

Making sure I take time away, and relax and de-stress. Have something akin to a regular work schedule (back when I could work!) were all important things that just weren't seen as viable.

There was a recent report I saw today on the BBC, that said 4 out of 10 managers admitted to not hiring someone because of their Epilepsy. This is no doubt, in my mind, because managers expect over time and "flexible hours" that only work in THEIR favour not yours.

Again, I refer to my old boss at WHSmiths who told me that requesting to come in half an hour later than expected I was “No A Team Player”. The half hour, for me, was essentially to have all my Absence Seizures out of the way before I started work. Instead, I ended up having them AT work, which caused more problems and resulted in more throughout the day which naturally caused issues when dealing with customers.

So yes, you might not realise it but sometimes just wanting to live a normal and peaceful life is the number one way to combat epilepsy!

Epilepticon Day 28 prompt

What’s something you do because of your epilepsy that most people don’t realize is related to your epilepsy?

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US people with disabilities in the supplemental security income (SSI) program can't have a penny over $2K in their bank account at any time in order to keep their benefits.

You know this economy. That amount is completely unlivable & makes it hard for people with disability to save for the future or have a safety net for emergencies.

A new bill would raise the max to $10K (or $20K for married couples). It would make a world of difference.

Show support, sign this petition.

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Epilepticon Day 17 prompt

Do you prefer epileptic or person with epilepsy or do you find them pretty interchangeable? Tell us about why you prefer one or the other too!

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Watch out for the Inside Out 2 trailer if you're photosensitive. There's a short part with a bright flashing red light against a dark background towards the beginning. I just don't understand why movie companies are constantly using strobe lights in their movies all. The. Time. So tired of it

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For me, what I would like is for more people to understand that there are not only different types of seizures, but also that those different seizure types can cause just as many problems as tonic clonics. When I requested accommodations at work, I was told I was making up excuses because I only had absences, and not tonic clonics. That we "all knew someone with epilepsy" and they "never complained". Which I think we all know is false.

So yes, I would like more people to understand that other seizure types exist, and that we have the right to complain about them!

Epilepticon Day 1 Prompt

Hi guys! Welcome to Epilepticon! I hope to be seeing everyone’s awesome posts throughout the month! As today is the first day, and this month is Epilepsy Awareness Month, we’re going to start off with a classic serious prompt:

What’s one thing you wish people understood more about epilepsy? Is it something you find yourself explaining over and over again, or something you don’t even attempt to explain because you know people won’t understand anyway, or just a common myth/disinformation/misunderstanding?

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Epilepticon Day 1 Prompt

Hi guys! Welcome to Epilepticon! I hope to be seeing everyone’s awesome posts throughout the month! As today is the first day, and this month is Epilepsy Awareness Month, we’re going to start off with a classic serious prompt:

What’s one thing you wish people understood more about epilepsy? Is it something you find yourself explaining over and over again, or something you don’t even attempt to explain because you know people won’t understand anyway, or just a common myth/disinformation/misunderstanding?

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Epilepticon Day 1 Prompt

What’s one thing you wish people understood more about epilepsy? Is it something you find yourself explaining over and over again, or something you don’t even attempt to explain because you know people won’t understand anyway, or just a common myth/disinformation/misunderstanding?

What I find myself explaining over and over again in fact has nothing to do with lay people, but with doctors. I have absence seizures mostly, but am constantly asked to bring my seizure diary to appointments...

I am not aware of most absence seizures, unless they lead to accidents. Seizure diaries are useless.

I have photosensitive epilepsy, but thanks to new meds my triggers no longer cause 'real' seizures, 'only' headaches and dizziness. So as things are now, there's no way for me to determine the seizure frequency because I do not notice my seizures.

Follow-up questionnaires do not apply to me because they ignore my seizure pattern. They seem to assume that absence seizures magically disappear after puberty. But they don't, at least not always. And this is what I have to explain over and over again. To neurologists. I have to explain it....... to neurologists. Yeah...

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It’s October now so a reminder that lawn decorations that cause flashing lights are dangerous for photosensitive people. Please keep any flashing lights you feel you need to places that aren’t easily visible from the street (and that includes the flashing lights themselves, not just the decoration, in case that wasn’t clear) and make it abundantly clear to visitors that they will be present when they come over. You never know who’s photosensitive, so flashing lights if they’re present at all should always be an informed opt-in experience.

If you have photosensitive friends please also be considerate when planning activities. If you know your friend is photosensitive and you want to invite them to a corn maze or a haunted house, or really most fall activities that you don’t have control over the lighting for, do research beforehand to figure out if it is accessible to them, and supply them with the information you were able to get so they can make their own informed decision, because they should be able to decide for themselves if they consider it safe, but it’s also nice as a photosensitive person to know that your friend is looking out for you and that you don’t have to do impromptu research that could take a while to find the information you’re looking for before you can respond.

Also a reminder for online spaces to tag gifs and videos that use flashing lights with #flashing lights , the epilepsy tag is a community tag to discuss issues that crop up with epilepsy, and the photosensitivity tag is for discussing photosensitivity related issues, by tagging with either of those you are actually shoving dangerous content in the faces of the people you are trying to protect.

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So this might be a hot take but I want to talk about those people who say it's bad to cure disabilities or that it's bad for a disabled person to want to be cured. Yes, in media it's generally bad to see disabilities be impossibly cured, often times used as a reward of some kind. But that doesn't mean it's bad for disabled people to want to be cured or to seek out a cure.

It's incredibly privileged to say 'you should embrace your disabilities and learn to accept them as a part of who you are' because not every disability functions the same way. Missing limbs and blindness aren't on the same level as chronic pain, for example. And I have not met a single person with chronic pain who didn't wish for the pain to stop. If a disability is causing someone to suffer, then who are you to tell them they should just accept their fate and not desire anything better?

It isn't about if people with disabilities should be cured or not. It's about their autonomy to decide for themselves how they feel about their disabilities and if they want to have those disabilities or not. No one should be shamed for wishing to be more abled.

To put this a little more in perspective, let's say we have two people who are color blind. One person may want to see the full color spectrum and opt to try out the special glasses that were developed to allow them to. But the other person may be fine with what they can see and have no desire to see the colors they can't see. And both of them are valid. What is not okay is for anyone to tell them how they should feel.

Does that make sense?

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This is absolutely wonderful news! It means that people in the UK can at least know that when these attacks happen, we at least have some power to fight back against them. Attacks like this have always been malicious acts of violence, but it is reassuring to know that this is now recognised by law.

Hopefully, this will extend globally, with social media changing their Terms Of Service accordingly. Meaning that we can all have a way to report those who bring violence upon us.

This legal safety net will hopefully also encourage more people to start speaking out about their epilepsy, tackling social change and championing our right to exist in a world where a simple video game or children's film will not put us in hospital.

The world and the internet at large is not a safe place for disabled people, but today the law has finally recognised that to be the case and made some important changes!

I'm so so so happy about this!

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Help a Homeless Disabled Person Shower!

On Sunday 10th September, my carer accidentally left the stove on when she left and caused a fire in the kitchen that spread smoke throughout the house. As a result, I am unable to stay in the flat and am currently homeless and sleeping on my parent's sofa. Because of my mobility issues caused by Myasthenia Gravis, Functional Neurological Disorder, and the fractures in my spine as the result of tonic clonic epileptic seizures, I need a fully accessible walk in shower in order to wash. This means that I haven't even been able to wash the soot off my body from the fire. My Landlady's insurance doesn't cover a place for me to stay whilst waiting for repairs, and it's looking very likely that she will not be renewing my lease in November either. As a renter, I only have contents insurance and it's still not clear if my insurance company are going to pay for anywhere for me to stay.

So right now I am trying to raise some money to book myself some temporary accessible accommodation for a few days locally whilst I try organise everything! You can donate to my Go fund me here!

Every little helps, and if you can't donate than just sharing would be enough! Thank you all so much for your time <3

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Help a Homeless Disabled Person Shower!

On Sunday 10th September, my carer accidentally left the stove on when she left and caused a fire in the kitchen that spread smoke throughout the house. As a result, I am unable to stay in the flat and am currently homeless and sleeping on my parent's sofa. Because of my mobility issues caused by Myasthenia Gravis, Functional Neurological Disorder, and the fractures in my spine as the result of tonic clonic epileptic seizures, I need a fully accessible walk in shower in order to wash. This means that I haven't even been able to wash the soot off my body from the fire. My Landlady's insurance doesn't cover a place for me to stay whilst waiting for repairs, and it's looking very likely that she will not be renewing my lease in November either. As a renter, I only have contents insurance and it's still not clear if my insurance company are going to pay for anywhere for me to stay.

So right now I am trying to raise some money to book myself some temporary accessible accommodation for a few days locally whilst I try organise everything! You can donate to my Go fund me here!

Every little helps, and if you can't donate than just sharing would be enough! Thank you all so much for your time <3

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Today on low-key kinda accidental ableism at a con: Was at a con this year and at some point the staff decided to project laser light images onto the wall above my booth. Which.. fine it's in my back so I can't see but the other artists were very clearly bothered because the lights were incredibly strongly flickering, instead of a reasting image. So my friend whom I shared a table with walked up to a con staff member and said "Hey can you turn this off? It's really bothering the artists to look at." Staff member said something and talked into his walkie talkie. Nothing happened. 20 minutes later i walked up to them and said the same, but also said "Hey, can you turn the lights off, I have epilepsy and don't feel safe." Response was "Now that's an actual reason." and less than a minute later the lights were turned off. It's good they turned the lights off. But nobody should have to disclose a medical condition in order to get heard. I don't know if anyone of the artists facing that specific wall had photosensitive conditions. But they were bothered by them and heavily distracted. It was exhausting to look into the corridor of visitors for them because of these lights. My epilepsy shouldn't be the only justified reason to listen to people saying strobes and laserlights are annoying/genuinely bothersome. Glad to be of service, but also, fuck you to this response.