A response to Guido Fawkes about his despicable use of my photosensitive seizures to score nasty political points

Image result for photosensitive scotoma

Migraine aura: scintilating scotoma

Yesterday I contacted the Labour party about their Labour Live event promotion video because it made me ill, causing a partial seizure. The video didn’t carry a warning about the flashing images it contained. I have had an apology from Jennie Formby on behalf of the Party, and it looks like the video has been taken down. The response came within a couple of hours of my contacting her. I feel that’s a very reasonable and rapid response. I was concerned that the video may trigger seizures in other people who are susceptible, too. 

I contacted Jennie on Twitter, as well as sending a direct message to the Party, and an email. The Tweet received a prompt response, for which I am very  grateful. I figured the Labour party get many emails and it may take a while for mine to be seen. 

It’s highly likely that the Labour party hired a communications and media company to undertake making the promotion video. So this issue needs to be addressed with those who actually did the work in putting the video together, too. 

I do feel the Labour party have responded appropriately. Although my hypersensitivity to flickering and flashing images and light is quite rare, it does make my time on social media very difficult. I only wish that Facebook and Twitter would respond as quickly to my complaints about the abundance of flashing GIFs that I encounter online, which sadly make me very ill, and can incapacitate me for days on end.

I also had the following excellent email response yesterday morning from the Labour Party:

Dear Sue,

Many thanks for your email. Thanks also for your support for the Labour Party – together we truly can build a Britain for the many not the few.

I am deeply sorry to hear that the video had this effect on you. I have noted your concerns and feedback and passed these onto the relevant team. They will factor this into any future video content we create. 

Many thanks for letting us know – it is very important to us that we can create video content that is accessible to all.

Best wishes,

Maria

Membership Services and Correspondence

The Labour Party.

I am more than happy with that swift response, because it indicates a party that cares about inclusion, and is more than willing to take responsibility for ensuring their material is up to a high health and safety standard. My condition isn’t very common, I guess I represent what you would call a very small minority group. Yet the Labour party have gone out of their way to ensure my wellbeing, and the safety of those who have the same level of sensitivity to flickering and flashing images. And best of all, the information I provided will be applied to released video material by the Party in future. That’s a very good outcome. 

All the more reason why I’m not happy that Guido Fawkes (AKA Paul Staines, the right wing politico gossip- monger) has used my illness to try and score political points. I am unusually very sensitive to flickering and flashing images, and don’t feel it’s appropriate to use someone’s illness and misfortune to make a tenuous attack on the Labour party. Or my account details, for that matter. In fact it’s a despicable thing to do.

I have requested that he removes the Tweet.

I have to say that it’s to their credit that Labour responded so quickly to my message.

I have a rare condition and don’t blame the makers of the video for being unaware of that. The Party responded promptly and appropriately. Unlike Facebook and Twitter, who have never responsed to my previous complaints about the flashing images that are frequently posted around social media. Christmas and New Year were particularly difficult for me on Facebook, for example, because of well meaning people sending me flashing images with their Christmas greetings. It caused me so much difficulty that I had to avoid my inbox for a couple of weeks. That’s because I am very very sensitive to flickering lights and flashing colours. Unfortunately such images can leave me ill and incapacitated for days.

Visual reflex seizures induced by complex stimuli may be triggered by patterned and flashing displays that are now ubiquitous, especially on social media. This said, ordinary fluorescent lighting, driving, walking past railings, moving escalators, looking at ripples on a pond and some geometric patterns may also trigger illness and seizures in some people who are particularly sensitive. I’m an individual who is unfortunately both photosensitive and pattern-sensitive, though I haven’t always been.

Sometimes, in susceptible people, seizures can happen because of the properties of video displays, the triggers are identified as perceived brightness, pattern, flicker frequency, and colour contrasts. 

Fawkes is a nasty gossip-mongering vulture, who will use anything he can to promote his vicious right wing views, while  being among the first in line to attack a “snowflake” like me. Some of his equally virulent followers commenting on the thread under his post thought my seizure was hilarious. 

That’s pretty low to stoop, even for someone who is a master at consistently clearing the pole in right wing moral limbo dancing competitions. 

A little about photosensitive and pattern-induced illness and seizures

Not everyone who has seizures because of flickering and flashing images has epilepsy. I don’t. Photosensitive epilepsy is quite rare, it’s a type of epilepsy, in which all, or almost all, seizures are triggered by flashing or flickering light. Only one in a hundred people with epilepsy have the photosensitive type of epilepsy. That’s a very small percentage of the population. However, some people complain that flashing imagery makes them feel generally unwell, too. A few people experience dizziness and nausea, but don’t have seizures. Others have flashing or flicker-induced migraines. I also suffer from migraines.

Both natural and artificial light may trigger seizures. In my case, it is thought that an illness I have called lupus has caused neurological changes that have led to the photosensitivity problems I experience. At first, I was diagnosed with classical migraine, as there is an overlap with seizure symptoms. An “aura” is common for both, which includes scotoma – a kind of temporary blindness, or ‘holes’, or sparkling shapes that take up large parts of people’s field of vision, severe vertigo, confusion, extreme mood and perception changes, coordination and speech difficulties, tingling and numbness, nausea and so on. Often there is muscle rigidity and twitching, or jerking. In my case, this usually affects my legs when it happens. Sometimes people lose consciousness during an attack, too.

My own symptoms started at the same time as the onset of the wider symptoms of lupus – susceptibility to infections, joint and tendon pain and inflammation, nerve pain, blood abnormalities and so on. Lupus is an autoimmune disease that can affect many organs and parts of the body. Very often it includes skin photosensitivity too, many of us develop a severe rash and illness in sunlight, even when we wear a sunblock.

Various types of seizure can be triggered by flashing or flickering light. These include tonic-clonic, absence, myoclonic and focal seizures. The most common is a tonic-clonic seizure. The seizure(s) will usually happen at the time of, or shortly after, looking at the “trigger.” Sometimes people may experience more than one kind of seizure, too. 

Again, photosensitive seizures affect a very small percentage of the population. Epilepsy -related forms of the condition usually begins before the age of 20, most commonly between the ages of seven and 19. Photosensitive epilepsy affects more girls than boys. 

The exact spacing of a pattern in time or space is important and varies from one individual to another: a person may readily experience seizures when exposed to lights that flash seven times per second, but may be unaffected by lights that flash twice per second or twenty times per second. Stimuli that fill the entire visual field are more likely to cause seizures than those that appear in only a portion of the visual field. 

Stimuli perceived with both eyes are usually much more likely to cause seizures than stimuli seen with one eye only (which is why covering one eye may allow people to avoid seizures when presented with visual challenges). Some people are more sensitive with their eyes closed; others are more sensitive with their eyes open.

Not everyone who experiences seizures through flicker sensitivity has epilepsy. A seizure without a known cause is called an “idiopathic” seizure. Those are the kind that I suffer from, though I am currently seeing a neurologist to try and work out why I am having the seizures. I have had an MRI scan to see if there are any brain lesions or inflammation, caused by the lupus, and I am waiting for some further tests.

A seizure is the result of experiencing a surge of electrical activity in the brain. The electrical disturbance can, as outlined, produce a variety of physical symptoms.

UK television broadcasters and studios now screen content through the Harding FPA Test, an objective standard of assessment of potential to trigger seizures in those susceptible to photosensitive seizures. I’d like to see social media platforms use the same standard of testing on GIFs and other moving images.

It’s now thought (by my GP) that my sensitivity to flickering has happened because of how lupus has affected my neurological system. I developed lupus during a pregnancy in my thirties. I’m so sensitive to flickering that I can’t drive, as lamp posts, trees and telegraph posts along the road act like a strobe light in a moving car, and trigger severe symptoms, such as the scotoma, which causes temporary blindness, severe vertigo, confusion, coordination difficulties and partial seizures. I can’t even walk past railings without experiencing problems, moving escalators also make me ill, and more recently, some geometric shapes with highly contrasting colours, like black, red and /or white stripes, have made me ill, too.

The word hertz (Hz) refers to how often something happens in a second. For example, it can mean the number of times something flashes or flickers in one second. It can also mean the number of times the scanning lines on televisions and computer monitors ‘refresh’ themselves in one second.

Most people with photosensitive epilepsy are sensitive to 16-25 Hz. Some people may be sensitive to rates as low as 3 Hz and as high as 60 Hz. I’ve yet to find out what ranges I am sensitive to. I know that a visible flicker on fluorescent lighting triggers seizures.I

I think a campaign to make social media a more “friendly” place for people like me would be a good thing.

I hope this article will help to raise awareness of this condition, which is extremely intrusive, restrictive and distressing.

Ways to reduce the risk of seizures if you have photosensitive epilepsy

  • Avoid looking at anything that you know may trigger a seizure. (Not aways easy!)
  • Avoid things that can increase your risk of having a seizure. These can include feeling tired or stressed, not having enough sleep, low blood sugar and drinking alcohol.
  • If you take epilepsy medicine, always take it as prescribed by your doctor.
  • If you look at something that might trigger a seizure, don’t close your eyes. This could increase your risk of having a seizure. Instead, immediately cover one eye with the palm of your hand and turn away from the trigger. This reduces the number of brain cells that are stimulated and reduces the risk of a seizure happening.

Related

One of the key reasons I have faith in the Labour Party, and give them my continued support, is their policies, which are inclusive, recognise the value of diversity and treat everyone’s life as having equal worth. This is such a stark contrast to Conservative policies, which emphasise competitive individualism and an elitist perspective of society, which is profoundly isolating, socially divisive and leads to exclusion and outgrouping.

This in particular impressed me last year, released in the run up to the general election –  Nothing about you without you – the Labour party manifesto for disabled people

 


 

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18 thoughts on “A response to Guido Fawkes about his despicable use of my photosensitive seizures to score nasty political points

  1. Wow, this is the first time I’ve seen a picture illustrating exactly the visual disturbance one gets with migraine! I have suffered from this since I was 11 years old and have often tried to draw pictures to try and explain it. I also say that it’s rather like looking at the filament in an old style lightbulb and it’s there blocking your vision wherever you look, until it grows larger and larger until it eventually reaches the periphery of your vision and disappears – but the headache still persists with a vengeance. Like you, I am able to manage it a lot more now by recognising the triggers and attempting to avoid them. The same things that give you seizures can set off a migraine for me, the railings, rows of trees etc. But one which is becoming more prevalent is the new type of electric light advertising billboard which is encountered alongside major roads and motorways (the A40 in London is one I can’t avoid unfortunately). I don’t know what they are called but the picture seems to be made up of horizontal lines of extremely bright (LED?) coloured lights which appear blurred and to flicker – just thinking about them now makes me feel headachy and nauseous I’m actually surprised that their use has been allowed because of the adverse health and safety risks to motorists, but, as with the LED lights on vehicles now, the manufacturers don’t seem to have to show that these things are safe before introducing them.

    Liked by 2 people

    1. I hate the way the sparkling zig zags “unfold” and swirl, making the vertigo even worse. I don’t always get this type of scotoma, sometimes I get grey holes that seem to be punched through my visual field, or holes,, or when I’m reading, a kind of tunnel vision where none of the words make sense and letters jig about on the periphery of my radically reduced scope of vision – that’s terrifying. Sometimes, parts of people’s faces are missing, though there is no “gap” or hole there to indicate the missing part, it just isn’t there. It’s all pretty horrid. Then there is the onset of the seizure or migraine. x

      Liked by 1 person

      1. Indeed. I know exactly what you mean, the missing parts of faces is particularly nasty. I also suffer with “floaters” in one eye, which are made worse by sunlight or computer screens and have a similar effect. On a lighter note – I recently thought I was getting an attack when I spotted a phone box across the road on the highstreet, it looked as if half of it was obscured from my vision and superimposed by the shop front behind it – very disconcerting. Then I managed to re-focus and realised that it was a new type with just one side and a roof!

        Liked by 2 people

      2. I have the “floaters” now, too, and some silvery worm type ones that light backgrounds show up the most. I had to take a treatment a few years ago that has caused a small area of retinal damage. My eyesight isn’t great now.

        I once had to read a report out at work in a meeting, and the fluorescent lighting in the room was on the fritz. I didn’t know back then why I felt so weird. Unfortunately, it suddenly affected my speech, and I sounded drunk, didn’t make any sense at all. My boss was very sympathetic , though. After a few moments of speaking rubbish, I got the visual aura with swirling zig zags that time, and after that, I had to go home as I was incomprehensible for hours after the event. Then I got the very bad headache. I don’t always get the migraine headache following “aura” symptoms. Sometimes I have a seizure, instead. And if I am very unlucky, I have a seizure and then get the migraine proportion headache a few hours later, too.

        I’ve seen those phone boxes too! Same thing happened, it was like a weird optical illusion.

        Liked by 2 people

  2. As he’s used your likeness without permission in his post, do you have grounds for complaint/copyright strike? I don’t know if Twitter supports such complaint routes.

    Liked by 2 people

  3. “….Fawkes is a nasty gossip-mongering vulture, who will use anything he can to promote his vicious right wing views. Some of his followers commenting on the thread under his post thought my seizure was hilarious….”
    Dear Kitty, whether you realize it or not, this small paragraph pretty much sums up many of the members of the nasty party who have belittled and are frequently demeaning towards the disabled and people with health problems – there’s a reason they are called the nasty party.

    Liked by 1 person

      1. No problem Sue, if that article isn’t helpful let me know I’ll see what else I can find, I read some where about filter extensions to add to browsers to help with conditions like yours, I’m trying to find it amongst the other ten thousand files on my laptops 🙂 Mx

        Liked by 1 person

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