No Strobing Items At Check-Out


My mom and I were walking to the check out area at a popular chain retailer when suddenly, it seemed like strobe lights popped out of nowhere. The store was selling rapidly strobing fidget spinners, which were all flashing asynchronously, and at a high frequency, each spinner with a red, blue, and green light. I went to stand away from the display while my mom checked out. I was glad she was there, because otherwise I would have had to leave the store, due to my sensitivity to flashing lights.

I didn’t say anything to the cashier, or ask to speak to the manager about the giant strobing display. My head was already hurting, and I knew it was likely a decision from corporate, not the individual store, so there was nothing they could do about it. Still, I was surprised to see that someone had decided the best place for a rapidly strobing item was at a place where customers couldn’t avoid it. Red and blue lights are one of the most common triggers for adverse responses to flashing lights- an episode of Pokemon flashed red and blue lights in a similar frequency and hospitalized hundreds of children with seizures many years ago. There are many medical conditions that can be aggravated by strobe lights- besides seizures and epilepsy, there’s also migraines, PTSD, and anxiety, to name a few.

I am not demanding that the store stop selling this product, as I’m sure it is very profitable given the increase in fidget toys, which help people with attentional conditions, autism, and anxiety, as well as people without these conditions. I would just like to request that the product be moved to another area of the store, and have a small sign warning customers of the strobe lighting. Having this item in an area where it can’t be avoided is a medical crisis waiting to happen.

If you encounter a strobing display similar to this, do not get angry at the cashier or other employee at the store, as it was likely not their idea. It is more effective to send feedback directly to corporate. Below, I have attached a sample message I sent to the store I visited:

Dear Company,

I went to visit your store today, and discovered there was a display right next to the check-out counter that was selling rapidly strobing fidget spinners. Had I gone to the store alone, I would have had to leave and not be able to purchase my items. Strobe lights are a medical trigger for me, as I have chronic migraines, and there are many other people who can be affected by rapidly strobing displays. If possible, please consider move this display out of a high-volume area and having a sign warning guests of the rapidly strobing lights.

Thank you,

Veronica

While some people do enjoy strobe lights, there are many others who can have very adverse reactions or just be downright annoyed. While I’m not looking to outlaw all strobe lights, I do hope that companies will remember their guests with light sensitivities and keep flashing products away from popular areas.

Photosensitivity in the Classroom

This post is dedicated to Mr. S, who will never see a flashing light or a light switch the same way again.

In November 2011, two months into my freshman year of high school, I began getting chronic migraines, with one of the triggers being visual disturbances like flashing lights- not hallucinating flashing lights, actually seeing lights flash.  This is commonly referred to as photosensitivity or photophobia. I went on medication to help this, but the medication ended up making me even more sensitive to flashing lights, in a similar way to photosensitive epilepsy/photosensitive seizures (this has since been resolved).  As a result, my teachers, friends, and I frequently were watching for possible flashing light triggers, prepared to prevent them from happening. Here are ten of the triggers we all learned to watch for in the classroom, and why. Please note that I was undiagnosed in high school and received my diagnosis of Chiari Malformation after I graduated.

Fluorescent lights

These lights often flicker for what appears to be no reason at all. Watch for lights that frequently flicker, and turn them off if possible, or move away from them. When putting in a work order to fix the lights, note that there is a student with a medical issue connected to flashing lights.

Light switch

Sometimes, teachers flicker the lights to get the attention of the students. My teachers would warn me before flickering the lights, as well as when they would turn the light switch on or off. One of my teachers got so used to this, they found themselves thinking to warn me before they turned off a light switch in their home (sorry, Mr. S!).

PowerPoint animations

PowerPoint animations can have flashing effects, or rapid movement across the screen. Some teachers disabled all of the PowerPoint animations for my class, which I really appreciated. Other teachers would give me copies of the PowerPoint so I could disable the animations myself.

Instrument tuners

While this will only be a problem in a band or other music class, instrument tuners tend to rapidly strobe, usually with red or green lights, to show if an instrument is in tune or not. For tuners with small LED lights, the person next to me would cover the lights with their thumbs, and watch to see if I was in tune.

Projectors

Some projectors may flash or have a strobing effect as they turn on or adjust to the display. Warn the student ahead of time when a projector is being turned on, and wait until the display is stable to begin talking about what’s on the screen.

Flash photography

At school functions and when there were visitors in the classroom, my teachers would request no flash photography, as it can be harmful to the students. One of my teachers would go as far as to say a student had a medical condition triggered by flashing lights, but this wasn’t always necessary to disclose.  Here’s my rant on flash photography.

Videos

Before playing a video, check to see if there are any strobe or flashing lights. For one of my college classes, the teacher wrote down the time in the video that there were the flashing lights, and would warn all students thirty seconds before that there was going to be a flashing light. Another teacher wrote down the dialogue that would be said right before the light, and the dialogue directly after. For certain movies, the teachers would just send me out in the hallway to work on another assignment, saying there were too many flashing lights.

Routers

Computer routers in the classroom can have rapidly blinking blue, green, or red lights. Other classroom equipment, such as portable microphones, can have the same type of lights. My teachers would cover these lights with tape, removing and replacing the tape at the end of the week.

Fire alarms

I had a note in the nurse’s office that said I could be pulled ahead of time for fire drills. I would be called out of class about five minutes before, and went outside to sit with the nurse far away from the lights.  Here is how I handle fire alarms in college.

Mobile applications

Some mobile applications use strobe or flashing effects, and so can tools such as calculators. Check for flashing lights ahead of time, and find alternative applications if needed. Some applications use an “epilepsy mode” to disable flashing lights as well (Read more here about what makes an app accessible). Also, check to make sure the device being used is not filled with flashing lights- read more about my experiences with a strobing phone here.

Bonus- Substitute teachers

Make sure to remind substitute teachers, and write in the substitute plans, that there is a student that is sensitive to flashing lights.  I had a teacher write in bolded, 72 point font, at the bottom of the plans to not flicker the lights and to announce to the class when a projector or similar device was being turned on.  My fellow students were very protective of me and would frequently remind substitutes not to trigger any flashing lights.

While I have become less sensitive to flashing lights over time, my experiences with photosensitivity and photophobia gave me an increased awareness of how many flashing lights there are in the world. While I can’t assume all of the flashing lights will just disappear, or that people will stop using them so much, I always appreciate it when I have friends and teachers that can help me watch for these triggers, and help me avoid them completely when possible.

Life with Chronic Migraines


The year is 2011, but I’m in too much pain to remember that at the moment. I’ve forgotten a lot of things- my own name, the name of my cat, what town I lived in, and who the president is. All I can sense is levels of pain that I have never felt in my life before, and I wish they would stop. My parents thought I was having a stroke, the local hospital thought it was a drug overdose. It wouldn’t be until three days later at the children’s hospital that I would get pain relief and the diagnosis of chronic migraines, something no one else in my family had.

Chronic migraines are defined as “more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use (International Headache Society).” Migraines commonly run in families, and can coexist with other neurological conditions as well. Another name for chronic migraines can be chronic daily headache. Since 2011, I have had more than 15 headache days a month, sometimes reaching up to 30 headache days, where I have a debilitating migraine every day, a symptom connected to my diagnosis of Chiari Malformation.

For me, my migraines are drug resistant, though my neurologists over the years have had me try several different medications with awful side effects. Topamax made me never hungry, Verapamil made me dizzy, Amytryptiline and Imitrex gave me allergic reactions, and Neurotin gave me worse side effects than I ever could have imagined. I was missing school to go sit in the nurse’s office or missing band performances because the flash photography was similar in frequency to a strobe light, my biggest trigger. I had to navigate freshman year of high school while on large amounts of migraine drugs with weird side effects, yet still having chronic pain. I wish that experience on no one.

I started to manage my symptoms with massage therapy and acupuncture, and found that helped a lot with managing my migraines. It didn’t lessen their frequency, but because there was less pain in my neck and shoulders, the pain seemed more tolerable. I also start finding simple remedies that help me manage my symptoms, like peppermint essential oil to combat nausea or doing yoga to release muscle tension. Using alternative medicine has helped me a lot, though I understand that it isn’t meant to cure my migraines.

My senior year of high school, I was in almost all virtual classes for several reasons, one of which was my chronic migraines. I would sleep through my first period class, come to school for second and third period, and often leave during fourth period. Alternatively, I would stay through fourth period and then go home and crash in bed. Sleep was really the only way I could manage my migraines, which could be triggered by flashing lights, loud noises, the weather, or seemingly nothing at all. Food triggers were ruled out as the cause of my migraines, as well as vitamin deficiencies and similar conditions. My migraines were confirmed to be caused by Chiari Malformation in October 2015.

Fortunately, I have been able to attend college several hours from home and continue to manage my migraine condition. I have a private bedroom, meaning I do not have a roommate, but do have 1-3 suitemates who I share a bathroom and living area with. My disability housing accommodations state that I should have a lower-level private room with air conditioning, and the ability to make my room completely dark, as I am sensitive to light and sound when I have migraines. I also have a file with Office of Disability Services that says I have migraines. I schedule my college classes at times where I usually don’t get migraines and often come home from class and sleep (read more about my bed here). I have also gone to class with migraines before, as I know the migraine won’t improve whether I’m sitting in my room or sitting in the classroom.

Often times, people can’t believe that I am able to function through my migraines so well, and ask how I am able to live through this pain. The truth is, I have two options- let everything consume me and just sit in my room all day, or get used to the pain and live my life. While that first option may be beneficial for some people (and I understand pain is relative), I have chosen the second option of developing a superhuman pain tolerance and just living life. I do not like talking much about my condition in real life, because I do not want sympathy or attention from others, especially people I barely know, as I can manage my pain just fine. My close friends and family know the depth of my condition, and that’s more than enough.

I can’t say that life with chronic migraines is the best thing ever, but I can say it has made me a more understanding person. Whenever someone around me experiences migraines, I can relate on a deep level to the pain, sensitivity to the world, and feeling like hair weighs 100 pounds. I understand there are people who have it worse than me, but my hope is that my experiences with chronic migraines can help someone else understand their condition more.

To The Parent Using Flash Photography in a Restaurant


Dear Parent,

I know you were very excited today to be attending the end-of-season party for your child’s sports team at a local restaurant today. The entire team was there, enjoying pizza and talking to each other, sometimes very loudly. There’s nothing wrong with enjoying the celebration, and this letter isn’t to complain about the noise (though my brother wasn’t happy about it being so loud). My problem is that to document this occasion, you decided to take several photos with the flash on. By doing this, you ruined my evening, and could have sent someone to the hospital.

You see, I have chronic migraines that are triggered by strobing or rapid flashing lights, such as those from a camera. When I see those lights, I get an intense migraine that knocks me out for a few hours. However, it’s not just me and fellow migraine sufferers who can have an adverse reaction to flashing lights. Photosensitive epilepsy is common in children, and those flashing lights could trigger a seizure. Seizures aren’t just limited to epilepsy, either- there are many other conditions that can have non-epileptic seizures caused by flashing lights. Some people have light sensitivity in general, and bright flashing lights can be an issue. Even people with anxiety disorders and PTSD can have flashing or strobing lights as a trigger. That’s a lot of people that could be affected by a rapid camera flash!

I understand wanting to photograph your child with their friends, but by using flash photography, you could be putting other people around you in danger. A better solution might be to take a big group photo at the beginning or end of the event, so that way you can see everyone. You can also just turn the flash off and continue taking pictures like you were, and simply retouch them for lighting later.

I’m pretty sure you ignored my mom when she told you that your camera could trigger a seizure, or a migraine like it had in me. My hope is that someday you will understand just how dangerous flashing lights can be for others, and you will think twice before using that camera flash in a crowded restaurant. For all you know, your child could develop a condition like this, and then you’ll be the one wishing all of the flashing lights would disappear.

Sincerely,

The person sitting two tables away with chronic migraines



 

How Do People With Low Vision…Handle Fire Alarms?


They can happen at any time. It can be 1:30 in the morning the night before a major exam. It can be pouring rain outside when someone burns popcorn. Or sometimes, it can just go off for no real reason at 5:30 in the evening, which is the exact circumstances that inspired this post. Regardless, whenever the fire alarm goes off, everyone needs to know how to evacuate and get out safely, but that is even more imperative for people with low vision. Here are some tips I’ve gathered from being in more than my fair share of fire alarm incidents.  While this post can be helpful for several other types of disabilities, I am focusing on blindness and low vision.

Have all your key things ready to go

I keep a winter coat and robe hanging next to my door, right by my blindness cane and key card, with a pair of slip on shoes underneath. That way, I just quickly unhook items and throw them on as I go. I also recommend taking these items into the bathroom with you when you take a shower, as well as a quick change of clothes in case the alarm goes off while you shower!

Know how to navigate stairs safely

This year, I only have to walk down three stairs to get out of my building, but last year I lived on the fourth floor, so I had much more stairs to walk down, and I’m not known for walking particularly fast.  I would practice walking up and down them early in the semester, with and without my cane, to make the navigation process easier.

Have an escape buddy to help you get out of the building

I had my neighbors last year help me down the stairs and let me know when to turn to get to the next staircase, and everyone on my hall knew how to help me if the normal people weren’t able to. My roommates this year guide me down the stairs and across the street to wherever I need to go.  If you’re trying to explain to someone how to be a guide for you, check out my post on how to be a human guide.

Report to building staff that you are safe

I usually text my resident advisor that I got out of the building and to let me know when it is safe to return.

Have a safe location you can go to while the incident is dealt with

Last year, I would walk down to the campus 24 hour Starbucks. Right now, I’m in the library across the street, but I’ve also hidden in the convenience store next door to my building, depending on the time of day.

Talk to friends about letting you come to their dorms during an emergency

I have gone to dorms of friends during fire alarms as well, since they know I don’t like sitting outside surrounded by flashing lights. Have a couple of backup places you can go as well.   Here are fifteen addresses to memorize on campus.

Ask about a fire safe room in the building

If you can’t evacuate, some colleges have a fire safe room you can stay in until you can receive help. While my building does not have one, I know of at least one college in Virginia that has this available for students. Read more about disability housing here, and more about questions to ask when choosing a college here.

If you can’t evacuate, call for help

If for whatever reason you can’t evacuate, call your local emergency number (911 in the United States), campus police, and building staff. When calling, state your name and your building name as well as your room number and what floor you are located on. Mention that you have blindness or low vision, and are unable to evacuate, and listen to the authorities for further instructions. If applicable, mention you have a case with your state department for vision loss (called Department of Blind and Visually Impaired in Virginia) or disability. Also contact building staff to let them know you are still inside and have called for help.

If the fire incident originates from your living area, make sure you are able to talk to the fire department

One time, the fire alarm went off in the kitchen adjacent to my dorm and I was woken up by the fire alarm. When I came back, I was believed to have been the one to have caused the problem. Do not let people try to blame you for causing the alarm to go off, and remind them of your vision loss. It also helps to remind them that you were doing something else when the alarm went off- sleeping, for example

Conversely, if you are the one to set it off

Make sure to talk about your vision impairment and work with the fire department to figure out a solution to prevent more incidents like this from occurring. Having your case manager might be helpful here.

Fire alarms are great at alerting people to emergencies, even if they can be an inconvenience at times. No matter what, do not tamper with or modify safety equipment in your dorm, as this can be dangerous as well as against state law. However, with these tips, hopefully your next fire alarm experience will go smoothly and you won’t be the person running out in their underwear with no idea where they’re going. And if you are…well, it happens.