Happy 2nd Anniversary


Today, I would like to wish a very happy anniversary to someone that has really become an extension of who I am, and has helped me through many situations that I would have had to walk through all alone otherwise.  They help understand what is going on- it’s a relationship unlike any other.

We met about a week after my freshman orientation at college.  We were introduced by my case manager from the Department of Blind and Visually Impaired, who had been telling me for weeks that I really should meet them, since they would help me so much in college.  I was reluctant at first, wondering what other students would think of me if we were seen together.  Would they think I was totally blind?  Would my friends think I lost my mind?  And would we look strange walking around together in public?  I then remembered that I had fallen down a flight of stairs at orientation, twice.  I shouldn’t care what people think of me.

I’m not sure how I would have gotten through my freshman year of college without them.  They were there to make sure I didn’t fall down the stairs as spectacularly as I had before.  They helped me get to class, the post office, the dining hall, to my dorm building, and so many other places.  It didn’t matter the time of day or night- if I needed them, they were there.  We also got to go explore other cities, taking trips to Washington DC, New York City, Philadelphia, Baltimore, Cleveland, and more.

My sophomore year, they inspired me to create a blog about my experiences with low vision and chronic illness.  I realized that I had so much to share, and I had always wanted to be a writer.  They appeared in many of my blog posts, even in my profile pictures.  I wanted to show others that our relationship was nothing to be ashamed of, even if others would point at us and stare sometimes.  This blog eventually went beyond what I imagined, allowing me to share my thoughts on life and managing my conditions.  I’ve also gotten to talk about my experiences with public schools, college, virtual education, and everything in between.  I’ve become a contributor for different websites, met Joe Biden, and even had an article written about me by the organization that inspired me to study assistive technology.  They have been with me through all of these things and more.

It’s hard to believe it’s been two years since we first met, and I can’t even begin to imagine what would have happened if we had never met.  Well, I can sort of imagine- I would have probably embarrassed myself a lot more frequently in public.  We have walked many miles together, and I know I can always count on them to be by my side in the future.  To anyone who is scared of having someone like this in their life, I say that they should take a chance, as something truly amazing could happen.  I know I never saw myself with someone like this before, and I can’t believe I ever thought that way.  I can’t go anywhere now without thinking of how much they have helped me.

So, happy second anniversary to my blindness cane, the tool that has saved me from so many obstacles and helps me see the world around me.  I will always be grateful that we met.

How Do People With Low Vision…Deal With Injuries?


It all happened in the blink of an eye.  I was getting off the bus for a band performance, and didn’t notice there was a pothole right in front of the bus door.  The chaperone told me that I shouldn’t need help getting off the bus, even though I always receive assistance from a friend.  I walked down the first step, and then the second step.  Then, I missed the last step, tripped, and fell into a gravel pothole.  I heard a weird crunch sound, but figured it wouldn’t be anything.  I turned to one of my close friends after they got off the bus, and said “my foot just made a crunch sound, isn’t that weird?”  This friend had watched me fall, and then said “yeah, I’m pretty sure you’re hurt, I’m going to go get someone.”  I was confused, because I didn’t feel any more pain than usual, but when another close friend (with EMT training) inspected my foot, they noticed how swollen it was.  X-rays and MRIs later confirmed that I had broken my left ankle in four different places, and strained it in two.  Go big or go home.

Dealing with low vision and chronic illness is challenging on its own, and adding another injury into the mix was extremely frustrating.  Here are my tips for dealing with short-term injuries while also balancing other conditions.  Please note that Ehlers-Danlos Syndrome has been ruled out as a cause for my chronic illness and injury.

Document what happened to cause the injury

Right after it happened, one of my friends took a picture of the pothole I fell in, and explained that I had tripped over a stair as well, essentially falling off of a school bus.  Other friends immediately alerted the band director and other staff members as to what had happened.  This is especially helpful if paperwork needs to be filled out documenting what happened.

Tell the doctor you have low vision

When I fell off the bus, my parents had to come get me and then take me to the local urgent care.  We made sure to remind each doctor, nurse, and technician that I have low vision, which helped them with trying to figure out how I had injured my ankle in such a weird way.  We also mentioned I had suspected Chiari Malformation (this diagnosis was confirmed almost exactly a year after I initially broke my ankle) and that I had balance issues as a result.

Knee scooters are better than crutches

Crutches can be a bad match for someone with existing balance issues and low vision, as it can be difficult to see paths ahead.  My parents rented a knee scooter for about two weeks from a pharmacy so that I wouldn’t break my other ankle trying to use crutches.  I had another close friend who would walk slightly ahead of the scooter and help guide me, as well as open doors for me.  This friend would also try and make sure I didn’t crash into a wall.

Make sure the brace is on correctly

The first nurse we worked with after I broke my ankle put my brace on incorrectly, and I had trouble learning how to put on the brace as well.  Have someone confirm that the brace is a good fit, and then have them teach you, kinesthetically, how to put the brace on and take it off.  When I had issues with my wrist earlier this year, the nurse at Student Health had me demonstrate to them how to take the brace on and off so they could make sure I wouldn’t cause myself further injury.  I had another friend confirm that my brace was for the correct hand.

Be prepared for elevated pain

Even though I have a very high pain tolerance, I found that even minor things could cause unbearable pain for me while I was recovering.  My migraines seemed much more intense because I had the additional pain of my ankle.  I spent almost all of my free time on my Yogibo Max, elevating my ankle, and trying to manage the pain.

Find a physical therapist who works with your conditions

My physical therapist from when I broke my ankle was not very familiar with low vision, and even less familiar with Chiari Malformation, which is why some of the exercises were more difficult than they should have been and caused pain.  I switched to a different physical therapist later on who was very familiar with Chiari Malformation, and was able to work with my low vision as well.

Find supportive pillows

Elevating the injured body part is very important.  When I hurt my wrist, I had this miniature Pillow Pet that I was always resting my wrist on, even while I was sleeping.  For my ankle, I often rested my foot on top of my backpack at school, or on a set of pillows while I was at home.

Ice packs

I recommend having several different ice packs ready to go at any given time.  My favorite ones are the flexible gel bead ice packs, because they do not feel super hard and I can easily conform them to whatever is hurting.  Here’s the one I have that can wrap around anything.

Add this to your medical history

Make sure to add the injury to your medical history for when you travel to doctors.  Believe it or not, my broken ankle was a factor in my diagnosis for Chiari Malformation, because my balance and leg spasms at the time were consistent with the condition.

Laugh about it

Not long after my injury, I was laughing a lot about the circumstances that had happened, as I really thought it was funny that I had fallen off a school bus and potentially broke my ankle.  Same with when I badly bruised my wrist after falling down a flight of stairs on my way to band practice.  While they are very lame injury stories, this is another day for me with low vision, Chiari Malformation, and occasional bad luck.  It’s just another part of life!

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.

Too High-Functioning


The teacher is passing out the classwork for the day, and there is a noticeable lack of large print or colored paper at the bottom of the pile. As it comes time to give classwork to my section, the teacher looks at me and goes “Oh shoot, I forgot you needed large print. Figure something out.” My best friend next to marks another tally on a list we call “times Veronica didn’t get her work”- in one class, we have over two dozen tallies.  I often leave the classroom to go enlarge my assignment, since I know that if I don’t, the teacher will give me a zero and remind me of how they wished I wasn’t in their class. Even though I have an IEP, and have had one since kindergarden for my low vision, that doesn’t seem to stop teachers from continuing to discriminate against me. I report this to my case manager or other staff member in the special education department, and they pretty much say the same thing each time:

“You’re so high functioning, it’s easy to forget about you!”

My parents and I are in an IEP meeting because I currently have a C, or a D, or a F in one of my classes. The teacher has repeatedly forgotten or refused to enlarge my work, saying it is a waste of resources. I have As in almost all of my other classes, Bs in a few of them. My parents are trying to figure out how an A student is getting such low grades, and why nothing is being done about it. But, by technicality, Cs and Ds are passing, and the special education department says that everything is fine, after all:

“You’re so high functioning, we have other students to take care of!”

I need some additional resources in the classroom. I try to bring this up with special education staff both at my school and at the district level. Most of my requests are ignored, because I shouldn’t need the help. When people do appear from the district level, they are asking me questions about other students, or strictly talking about other students, saying that I am an easy case, they don’t have to worry about me, there are worse-off kids that deserve their time, and I am wasting their time. I realize that the only way I will succeed is if I figure it out myself, since they always tell me:

“You’re so high functioning, you don’t need our help!”

I’m a college student who is studying assistive technology and am waiting for a friend after a band performance. I’m holding my instrument, wearing sunglasses that block out the glare of the lights, and balancing my blindness cane in the other hand. While I’m waiting, a person I have never met walks up to me and starts asking a series of rude questions about my vision and how they had never met someone like me before. They do not stop talking to me, and get frustrated with me that I don’t respond. Later on, I am told to apologize and answer their questions, and their response is almost exactly what I expected:

“You’re so high functioning, that’s inspirational!”

My typical response to people calling me high functioning used to be saying “thank you, and so are you.” However, recently my attitude changed about this, and I realized that I could replace the negative phrase with a more positive one. Despite the best efforts of school personnel, I have been able to see past the negative circumstances given to me and still succeed in school. I have discovered my passion for assistive technology and helping others to succeed. My condition is a major factor in my life, yes, but it isn’t the only thing in my life. I am not just high functioning:

“I am high achieving.”


Answering Stranger’s Questions- College Edition

As college decision day approaches, prospective students and their families have been touring my college, trying to decide what school will be the best fit for them. Often times, college is the first time people are exposed to a large, diverse population, and it can seem overwhelming. Naturally, people are inquisitive and like to ask questions, sometimes not thinking about how to phrase them.

Because of all of the visitors on campus, I have been using my blindness cane more often for identification purposes, so I am less likely to be hit by a car. With low vision, it can be difficult to navigate campus when there are so many visitors driving around. As I have been walking on campus, I have had many families approach me or loudly talk about me using a blindness cane, sometimes in a very rude way. It can be difficult to answer these questions, especially when they have negative or offensive tones, but education is one of the best ways to combat ignorance. Here are some of the questions I have been asked over the last two weeks by visitors, and how I answered them. I have been requested to add a trigger warning for what may be considered ableist slurs/language and offensive terms.

Whoah! Are you totally blind?

No, I have low vision and poor peripheral vision, meaning I have trouble seeing what’s around me. I use my blindness cane to help me analyze my environment and as a cue to other people that I can’t see very well.

Can you see me?

For some reason, I often hear this when people are standing right in front of me.  I usually respond with “sort of” or “yes.”  If it is someone who is convinced I can’t see anything, I usually find some feature that I can mention to them, for example a blue shirt or green backpack.

Look kids, a blind girl!

I was walking with a friend when someone yelled that in our direction. We didn’t want to yell back that I had some vision, because that would waste time. Instead, my friend yelled back”check it out, a sighted person!”

What’s with the sunglasses inside?

I wear tinted glasses to help with light sensitivity and glare. No, they aren’t transition lenses, they always are this color. And yes, I guess I do wear sunglasses at night, like the song.

What’s your major?  Oh, that’s not a real major

I’m studying assistive technology and software engineering, which is a fairly uncommon major but there are many different careers available, so I will not have an issue finding a job after graduation.  I have learned to give an example of what I will do after college, so when I say my major, I add that I am “studying to create tools for people with disabilities.”  Often times, people then think my major is really cool!

How come she can see but uses a cane?

Another friend was asked this by an employee while we were at a restaurant. My friend explained I have some sight, but still rely on the cane frequently. A different friend responded by saying “she runs into less walls this way” or “it’s easier to figure out where she is based on the taps of the cane.”

You’re too pretty to be blind!

While I’m not blind, I have low vision, my favorite response to this statement is “apparently not!”

You’re too young to not be able to see!

See above- apparently not!

Why do you disableds think you can just parade around campus?

This was said to me earlier this afternoon, and I just wanted to shove my post “You Belong” in their face. People with disabilities fought very hard to be able to attend college, and we deserve to be here, just like everyone else.

I didn’t know blind people could go to college!

I’ve answered this a couple of ways. For people that seem pleasantly surprised, I say that there are laws that make this possible, and I am grateful for the opportunity. When someone seems surprised in general, I just say “here I am!” And when someone seems greatly upset that someone with low vision can attend college, I just smile and move as quickly as I can from the situation.

You’re taking education away from someone who can see!

I got into this college not because of what I have, but who I am as a student. It had nothing to do with my low vision- my essay to admissions wasn’t even about my eyesight, it was about volunteer work. I’m not here because I can’t see.

Hey, can you give us directions to…oh nevermind

I’ve had several people approach me for directions, look at the cane, and quickly try to move away. I actually know this campus extremely well, and would be happy to help you find your way to wherever you need to go!

How bad is your eyesight?

I used to explain a lot more, but now I just say “it could be worse, but it’s still not great.” This question doesn’t really bother me, as often it is how people start conversation when they first meet someone with low vision, but it still can be an interesting question to answer.

I hope these answers help you when dealing with questions of strangers. Feel free to add more questions/answers in the comments below!

My Phone Isn’t Paper

Back in high school, I had teachers who didn’t believe that my vision was as bad as I said it was. They believed that I was like the rest of my friends- texting, reading, and driving around. These teachers would often ask me, my friends, my parents, and even my case manager why I could be texting (or doing some other task) but not able to see what was on the board or on my non-enlarged classwork. And honestly, it was very frustrating to explain time and time again.

I have many accessibility settings enabled on my phone and also use third party apps in order for me to see my phone clearly. The font size on my phone is the same as the font size I receive for print materials, and I have a high contrast filter applied. As a result, I am able to text my friends easily and use my phone as much as anyone else.

I also use an eReader to read books,enlarging the font size to the largest one available. I have a print disability, meaning I cannot read small text, which is why I had an IEP in school with accommodations that included large print. Comparing my ability to read accessible materials and my ability to read inaccessible materials is unfair.

As I’ve gotten older, more and more teachers have asked me if I drive or have a learner’s permit. Since I could barely see the board even with visual correction, I was always confused when teachers were surprised that I don’t drive. One teacher went as far to ask my friend sitting next to me if I was able to drive, trying to see if they could trick my friend into telling what they believed was the truth. Of course, my friends often laughed at the idea of me behind the wheel, saying I would have six casualties before I even pulled out of the driveway.

The most frustrating comments of all were when I was asked why I couldn’t see perfectly, even with glasses. Just like crutches don’t make someone walk perfectly, glasses don’t make someone see perfectly, it only gives them the maximum correction. That may not mean perfect eyesight, and they might need some accommodations to ensure they are able to see things. Never doubt that someone could have low vision just because they are wearing glasses, and don’t compare their sight loss with correction to someone’s sight loss without correction. Also, if someone has an IEP, chances are they need the services they are provided, and it is a bad idea to argue that they don’t, especially when it comes to low vision. Assistive technology has come a long way, allowing people with disabilities to seamlessly integrate with their friends, and I will always be grateful for the technological advancements that have helped me succeed.

Having an Undiagnosed Chronic Illness in High School

Back in high school, people often asked me why my vision was so bad, why I had frequent migraines, why I wore a leg brace several days a week, and how I simultaneously looked completely normal.  It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself.  Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.

Isn’t there medicine/glasses that can fix this?

WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again.  Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have.  I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about.  Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is.  Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.

You’re faking for attention

Ah yes, I must be faking my condition.  I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage.  I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird.  I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick.  And most of all, I love  not being able to do my classwork because I can’t see it, and having the teacher give me a zero!  All sarcasm here, but people say that a condition is fake when it is something they don’t understand.  What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.

I wish I had your condition, haha!

I wish I didn’t have this, but hey, things happen.  There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights.  Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal.  I just laugh off the comment and drop the subject.

What do you even have?

If you can answer this question, then you would be a totally awesome person.  My condition baffled doctors for many years.  When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions.  About a year later, he looked at us and said “time to find that zebra!”  I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn.  Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had.  Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with.  I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition.

If I were you, I would be in bed

Well, I would love to be, here I am at school regardless.  Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done.  I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me.  While pain definitely is relative, I have learned to function through it and be able to continue living.

Why can’t you do this anymore?

As my vision has gotten worse, my need for accessible materials has grown exponentially.  I’ve also found it more difficult to participate in activities like dance.  It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done.  I got more into writing and playing instruments after I got sick, and took up several other interests as well.  This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done.

Have you tried essential oils?

I have had several people tell me that my symptoms can be cured by essential oils.  I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms.  I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.

Aren’t you a little young to be dealing with these medical issues?

Yes, yes I am.  Another favorite response to this question is “apparently not!”  Chronic illness can strike at any age, it does not discriminate.  While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that.  Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends.

Why can’t you do this, but you can do that?

The environment I am in greatly influences whether I am able to perform a certain task or not.  If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them.  Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in.  Just because I can do something one day doesn’t mean I can repeat the same task the next day.

It would suck to be you

Actually, no.  Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise.  I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning.  As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition.  It’s important to be grateful for the opportunities I have.  My illness will always be something I have, and never who I am.


 

Save Bookshare

Author’s note- Bookshare, a service that provides large print and Braille digital books for people with print disabilities worldwide, is currently in danger of losing federal funding. As a student with low vision, I have been using Bookshare since 2011 and it has dramatically changed the way I read. Below, I have written a sample letter for my local congressmen and senators so they can see how important this service really is. Feel free to use my letter as a template to send to your local representatives.  Read more about Bookshare here.



Dear (representative),

My name is Veronica, and I am a college student here in Virginia studying software engineering and assistive technology, to develop tools for people with disabilities. I graduated from Virginia public schools in 2015 with an advanced diploma and a 3.8 GPA. In addition, I run my own blog about assistive technology and disability life at www.veroniiiica.com. This wouldn’t have been possible if I didn’t have Bookshare, an accessible media library that’s in danger of losing federal funding in the FY2017.

I have low vision, which means that I can’t access standard print materials and require large print. Large print books can be very expensive and hard to find, and sometimes the font size isn’t big enough. Bookshare digitally scans in books so that users can access them in whatever format suits them best- large print, Braille, or audio. Almost any book that can be found in the local library can be found on Bookshare, and I can read the same books that my peers are reading. I’m not just limited to the small large print selection at my library or the even smaller selection at the local bookstore.

I have been using Bookshare since 2011, and it has helped me tremendously both inside and outside of the classroom. Before I had Bookshare, I would have to order large print books that would take weeks to come in, and then I would have to catch up with the rest of the class on the reading. My classmates would talk about books they had read for hours on end, and I would often be excluded from the conversation because large print wasn’t available for the book they were talking about, or the book would be too heavy for me to carry around, like in the case of the Harry Potter series. Once I got Bookshare, I could carry my books around on an eReader or tablet, and download a book almost instantly to read in class. I started reading more and more, and was able to join more discussions in class. Education is invaluable, and with accessible materials, more students are able to learn and go on to pursue higher level education, enter the workforce, and contribute to society. By making these materials accessible, students can thrive in the educational environment, as opposed to failing because they can’t see the materials and believing that they just can’t learn.

People with disabilities are one of the fastest growing minorities here in the United States, with about 1 in 6 people having some type of disability. Disability affects all economic classes, races, nationalities, and other demographics. By funding Bookshare, it ensures that more than 400,000 people with print disabilities are able to access materials. Without it, the responsibility would fall on state and local governments to provide for their students, and the selection wouldn’t be as large, easy to access, or as inexpensive as Bookshare is- Bookshare is able to create materials at a cost that’s fifteen times less than the previous national program.

I hope that you will advocate to restore the Technology and Media FY2017 budget line to $30 million, the same as it was in 2016. Bookshare is extremely important to me, and so many other students, and we don’t want to imagine life without it.

Sincerely,

Veronica Lewis

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,

My head still hurts

 

You Belong

Last year, I found myself having a conversation with someone who was not knowledgeable about people with disabilities. They were shocked that I was in college, because I have low vision, and kept asking me why I “took the opportunity away from a sighted person to attend this college.” I was in a bit of shock, and explained that I had attended public school just like them, I took classes in the general education system, and applied to college just like the rest of my friends. I even pointed out that I was in the engineering department at my college, something that I don’t often mention to people I have just met. They didn’t seem to care and kept insisting I was robbing others of educational opportunities. I dropped the topic and walked away.

Earlier today, my friend had a near identical conversation with someone who claimed that students with disabilities shouldn’t even go to public school, let alone go to college, because it would be impossible for them to accomplish anything. My friend came to me depressed, as they had taken the words of a complete stranger to heart. I don’t know the exact circumstances leading up to this conversation, but I want to remind anyone who has ever felt discouraged after these types of conversations of these two words:

You belong

You are a person with a disability, not a disabled person. After all, you are human, and the disability is something you have, not who you are. It is not a good thing or a bad thing, rather just a component of the person you are.

You can attend public school and receive accommodations thanks to the Individuals with Disabilities Education Act (IDEA), something that has been around for over forty years. It lets you be in the least restrictive environment for your learning, meaning that you have the right to be in the classroom if that’s where you function best. And you also have the right to receive services that help you learn, such as large print, Braille, extra time on tests, and so much more.

You can go to college thanks to the Rehabilitation Act of 1973, Section 504, which prevents discrimination based on disability. Your college helps you succeed by giving you a disability services file, and you are held to the same standards as other students. You are not stealing opportunities from other students because you have a disability, because chances are, your disability was not something you listed in your college application, so it wasn’t something you were judged on.

You can go anywhere. The Americans with Disabilities Act of 1990 grants accessible transportation and buildings, as well as many other things. Title II also grants workplace and postsecondary disability accommodations. I joke that the only jobs I can’t hold are taxi driver and brain surgeon, but thanks to this law, I can be a software engineer or work in an assistive technology lab, or whatever else I want.

Things may seem a bit scary right now, and it’s okay to admit that. But don’t think for a moment that people with disabilities don’t belong in the world we live in. Albert Einstein had dyslexia and became one of the most brilliant minds of our generation. Stephen Hawking uses a communication device to deliver mindblowing theories about the world around us. Stevie Wonder and Ray Charles didn’t let blindness stop them from creating music. And of course, there are people like Helen Keller, Christopher Reeve, Edward Roberts, and so many more that helped to advocate for people like them who lived with disabilities. Without these people, our world wouldn’t be the same.

So remember this when someone tells you that people with disabilities should be anywhere but where you are right now:

You belong.