Do we have a "disability"?

diop

I've been pondering this recently. We all have severe difficulty using new technology, which in turn causes significant financial uncertainty (unable to work on a new computer full-time), physical/mental wellbeing at risk due to exposure to 'bad' devices, isolation as a result of not being able to comfortably use new technology to keep in touch/socialise with others.

In the UK, one section at Citizen's Advice describes what counts as a disability.

An impairment doesn’t have to be a diagnosed medical condition. If you’re suffering from stress, you might have mental impairments - like difficulty concentrating - as well as physical impairments such as extreme tiredness and difficulty sleeping. It still has to have a substantial and long-term adverse effect on your ability to carry out day-to-day activities.

Your impairment doesn’t have to stop you doing anything, as long as it makes it harder. It might cause you pain, make things take much longer than they should or mean that you’re unable to do an activity more than once.

However there isn't even a name for our condition, just an aversion to modern screen lighting/rendering/dithering. Other charities such as LightAware have exposed the issues surrounding LED/Blue light, and I believe some people are receiving some form of entitlement/benefits from the state (at least here in the UK) as that condition is recognised. This dithering/rendering fiasco isn't recognised (yet).

I don't generally like to use the term disabled as that evokes images of a physical disability to me. Nether-the-less being unable to earn a living or even casually use technology has to be acknowledged as a severely life-impacting situation, which the state and scientific communities should sympathise with and try to work towards a solution. This whole transition for me in the last decade from 100% usable > 100% unusable technology has had a dramatic impact on my relationship with technology, and also financial/physical and mental implications.

What do you think?

Sunspark

I would say no, because it's not universal and unfixable like a mobility, hearing, etc. disability.

KM

I think if you get pain and other severe long-lasting symptoms from most lighting and screens, it's a disability. Doesn't mean anyone else will acknowledge it though. I can't go anywhere else anymore - stores, other people's homes, without experiencing mild to strong symptoms but it seems it's not backed up by medical research. Plus even if a screen is usable, those modern OS eye strain issues make it hard if not impossible to use a modern OS in a productive way. To explain all that to a doctor is difficult. Eye doctors, neurologists, name anyone, chances are they have never heard of it.

AGI

KM To explain all that to a doctor is difficult. Eye doctors, neurologists, name anyone, chances are they have never heard of it.

I just visited an occupational doctor. His opinion is that what I call bad lights and devices may not be the real trigger. I may be experiencing eyestrain and neck tension because of an irregular sleep cycle and because of stress.
I had the impression I sounded like a fruitcake so at a certain point I stopped providing details. There is no point talking of dithering and software / OS / driver updates and graphics cards when none of these have been recognized by the hi-tech and the medical community as a source of discomfort the way we experience it. Sadly, no one believes that I am in the condition I am in right now, as of Wednesday, for having tested a couple of laptops in a shop last Saturday for 20 minutes.
I actually intended to discuss CBD oil, as I found out it is legal here, but the doctor was not aware / did not have a good opinion of such drug and I came out with some sleeping tablets.

Unless we find a medical proof of our discomfort, e.g., an EEG showing some weird response under exposure to offensive lamps/devices, we are not going anywhere.

JTL

AGI I had the impression I sounded like a fruitcake so at a certain point I stopped providing details. There is no point talking of dithering and software / OS / driver updates and graphics cards when none of these have been recognized by the hi-tech and the medical community as a source of discomfort

The closest I've gotten to a doctor recognizing this condition for what it is, was when I went to an eye doctor and brought up PWM flicker, and the doctor agreed and possibly speculated it's similar to photosensitive epilepsy. This was around 4 or 5 years ago.

AGI

JTL Yeah, indeed the only piece of information the doctor liked was when I talked of subliminal flicker.

bkdo

I would say 100% yes, depending on how severe it is for each person. It might sound a little hyperbolic, sure, but what else would you call a consistent, continuous, negative affliction that affects your day-to-day activities? What makes it different from, say, a broken arm that won’t heal in terms of affecting daily life, work, recreation, etc?

Anyway, as others have mentioned, it’s really frustrating to have this issue and not be taken seriously. I wish there was a way to figure out the root cause and be able to take that to a specialist, all I really have right now is “Flickering, I think”.

anyone

yes, of course. that's a disability.

CampFirefly

Hey folks, It took me two years, a lot of research and persistence to get a solid diagnosis and treatment plan. While at Mass Eye and Ear, the director of neuro-ophthalmology said he has heard the same symptoms from six other patients within the year, yet there is no true label for the disorder, so instead I was given the diagnosis of FND. I work with the FND Clinic at MA General Hospital. I still cannot work in a LED environment and I can only drive short distances during a clear day, but I no longer suffer from week long migraines and I can cut short my reaction to the lights with the strategies I've learned. I received long-term disability benefits while out on medical leave. My employer was very resistant to providing me with an LED-free work area, so I opted to retire early rather than fight an uphill battle. I hope this helps.

bkdo

CampFirefly Thank you for sharing the information. I'm glad you were able to get some kind of a diagnosis, though it's frustrating that there's so little awareness of these eye issues.

I did a little bit of reading on FND & I saw that there are some general recommended treatments (Psychotherapy, physical therapy, medication, lifestyle changes, etc), were you advised to try any of these for your condition?

jen

CampFirefly I had similar experience with my previous employer. I luckily don’t have seizures, but did start getting new debilitating migraines when my school put in LEDs in a remodel of space for our science department. They tried to force me to keep the LED lights on and it was a tricky battle, especially while waiting to actually get in for a new patient visit with a neurologist. Is it a disability when your employer damages your health to the point where you can’t work effectively? I certainly wasn’t disabled before the school installed the LEDs. Like you, I left the school - the environment became too unhealthy to leave me much energy to fight a battle.

Other than the seizures, it sounds like your symptoms overlap mine quite a bit. I’m going to see if my neurologist in NYC (Mt. Sinai headache center) will connect with yours. Maybe if they know of enough patients we can force some research and perhaps changes in the lighting industry. Bad LEDs are becoming so ubiquitous it’s becoming impossible to navigate normal life.

Thank you so much also for sharing the strategies they taught you! I'm looking forward to trying them!

CampFirefly

bkdo Hi and thanks for responding. So I was told by the director of the FND clinic at MGH that FND it is a bit of a catch all diagnosis for things that are obviously going bunkers with the brain, yet there is no clear diagnosis as of yet. He had me do a few things including occupational therapy (life saver!) and stress management including. As a bit of background info., I hold a masters degree in counseling and I have taught several stress management seminars - HA! What did I know?! It took me a few months (and a very cute puppy holding me down to the floor while snoozing on my lap) to find a few types of meditation that worked for me. Once I did/could practice meditation on a daily basis it changed my life (highly recommend the book 10% Happier as light motivation to keep with the practice). These helped to stop the debilitating reactions I was having to LEDs, but it is obvious that my brain reacts to the light intensity, flicker rate and/or color adversely. As long as I practice mindfulness and use some distraction strategies I've been taught (tricking the brain into paying attention to something else - for example if I start to have a reaction to a LED light I might start snapping a hair elastic that is on my wrist - my brain quickly switches over to the new stimulus and that stops my symptoms - pretty cool, huh?).

diop

CampFirefly Thanks for the reply.

Am I right to assume that your situation (like many others here) is that computers/lighting didn't cause any problems for you until the last decade or so? Do you have old tech/computers that you still rely on? One thing I have found myself is that a bad device is a bad device. No matter how long I try to use one for (I have tried 40hr weeks on new tech for testing), it never gets comfortable, or I get used to the negative symptoms a little however then when using a good device, the relief in symptoms is measurable and very rapid. Everything looks calmer on a good device.

I know charities like LightAware here in the UK are trying to raise awareness re: the issues with LED lighting and the ban on incandescent lighting. I still feel that computer rendering is the silent link in the chain that nobody without a computer science degree will have any idea about. People will just assume "it's the monitor" or "I must get my glasses checked/take X medication for my headaches". That is a band aid really and essentially avoids responsibility of the tech companies to ensure the products are accessible to all in the first place (MS/Apple always champion their accessibility options).

I would be interested to know (either here or in a PM if possible) what tests you went through in order to gain the diagnosis, and looking forward are you to be continually assessed? How will it be decided in the future when devices/lighting are finally good for you? There is an e-ink monitor coming out soon, there is info on another thread, it could be a gateway for some of us here to work on computers somewhat normally again.

Meditation/relaxation is never a bad thing, however my slight scepticism is still that a bad device is a bad device. I could be really chilled out, but if I put my hand over a flame I'm still going to get burnt. I guess I'm trying to point the blame at the external stimulus, and not the observer. 😀

CampFirefly

jen Hi Jen, I sent you a private message 🙂

jen

diop One thing I have found myself is that a bad device is a bad device. No matter how long I try to use one for

That's also the case for me. Bad lights are bad lights. LEDs with flicker are always bad for me - if I'm not in a hypersensitive migraine state, it takes about 5 minutes for the pain to start if they have really bad flicker or longer if it's not so bad. LEDs without flicker are always fine for me. Bad lights always feel worse with more time.

A qualification I'd make is that for screens, flicker is always bad for me, so sometimes certain software or particular types of video can be bad on an otherwise good screen. Some screens are always bad.

And when the flicker gives me a migraine, I become even more sensitive to low levels of flicker during the migraine that usually don't bother me. Brief exposure to certain ""invisibly" flickering LEDs in passing usually doesn't bother me at all. But when I have a migraine, they cause pain pretty immediately and seem to worsen the migraine.

I did't notice having any flicker sensitivity before my LED light-caused migraines started in 2018.

I have a migraine now, so have tried a couple of the "distraction" techniques mentioned. So far, unfortunately, it doesn't seem to help, but I'd still like to try to see if it might help prevent a migraine from starting. I am curious whether distracting the conscious part of my brain could also distract the unconscious part of my brain that is having the migraine reaction. Not super practical for the workplace, but maybe it could help with brief trips to stores with bad LEDs.

CampFirefly

diop So, my issue started in 2010 when my partner changed the lights on our Christmas tree to LEDs. The new lights made me feel "unwell." Later, we purchased a new flat screen TV that made me "unwell" to walk by, and unable to watch. I didn't figure out that it was the LEDs that caused me to feel off, until I moved to a community that had LED street lights. It just so happened that LED headlights also became popular at the same time. Then cell phone screens started to trigger me. For me, my reaction is now instant and strong. Depending on the brightness/type of LED, my reactions accommodate to create a greater sensitivity. For example, my mom turned on her iphone X about 15 feet from me and I had an immediate and harsh reaction - it felt like she slapped me in the face with her phone.

I do have old tech that I rely on. Actually, I'm trying to replace my Moto G4 Play right now. I replaced my first, and have replaced the screen on this one three times. It's time to upgrade. I can successfully use my newer Acer Aspire E 15 laptop without a problem. And I purchased a Sony Bravia TV four years ago, as I learned that all Sony Bravas at the time were flicker-free. The only time I've had an issue watching the TV is watching a newer movie with LED headlights or emergency lights.

I agree; a bad device is a bad device. I can usually tell if a device is going to work for me in the first second my eyes see the screen, or within one minute.

Funny, I spent a month in Italy traveling up the west coast in 2018 and only got triggered three times. Each time it was from an item that could be purchased on Amazon. It seems that there are higher standards in place there then here in the US.

My primary care physician did his due diligence and sent me to a number of specialists. All tests came back clean, which is why I was diagnosed with FND.

I hope this helps.

Be well,
Debbie

CampFirefly

Hi folks,

I'm short on time right now; I will add more later...

Agreed. Certain LED lights will trigger my brain regardless. But, I found a more relaxed body flexes better, therefore allowing me to have more control. When I am stressed, my reaction to LEDs is sharp and immediate. In some cases I lose the ability to think for a few seconds. And, a headache is certain to follow. When I am less stressed, I "remember" to use the distraction techniques and my recovery is much faster.

I use the distraction techniques to cut short my reactions to triggering LED lights and prevent migraines. Once I have a migraine, I find that I am super sensitive and the distraction techniques provide little to no relief.

More later...
Debbie