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Happy 2nd Anniversary

Veroniiiica LewisLeave a comment


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.

Life with Chronic Migraines

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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

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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.”


My Phone Isn’t Paper

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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.

You Belong

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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.

Buddy Holly’s Glasses

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Today marks 58 years since the plane crash that killed musicians J.P “The Big Bopper” Richardson, Ritchie Valens, and Buddy Holly, as well as their pilot, Roger Peterson. Their deaths came as a massive shock, and the tragedy was later nicknamed “The Day the Music Died.” However, the crash didn’t just take the lives of three talented musicians. It took the lives of a father, a son, and a star who would pave the way for others who wore glasses.

Buddy Holly was reported to have 20/800 eyesight before correction, but hated wearing his glasses in his early days of performing. He believed that they took away from his image as a rock and roll star and wearing glasses would impact him in a negative way. The contacts he was originally fitted with could only be worn for an hour at a time, and caused major discomfort, and didn’t even correct his vision much.  He considered wearing glasses after he realized he couldn’t see his audience, but eventually he started wearing them after he dropped his guitar pick at a show, realized he couldn’t even see the floor it was on, and had to crawl around on stage looking for it…and still couldn’t find it.

After the incident, his optometrist ordered thick black frames with horned accents from a supplier in Mexico City, and had him try them on. After he realized he could see the people around him, he took the glasses and never performed without them again. He became one of the first celebrities to be seen in public while wearing glasses, and the first rock musician to wear them while performing. 

Even though he died so long ago, Buddy Holly’s legacy continues even to this day, beyond his musical influence. Instead of being criticized for wearing them, his glasses became known as his signature look and one of the most recognizable items in rock and roll history. People saw him as an incredibly talented musician who wrote and arranged all of his own music instead of as a person who had low vision. Performers such as John Lennon and Elton John wore their glasses on stage because of him, and many others followed. Glasses became more of a fashion statement instead of something to be made fun of, and one of the most popular styles of eyewear today is modeled after his trademark thick-rimmed glasses.

I’ll end this post with a picture of me from earlier today at the National Portrait Gallery, wearing Buddy Holly glasses of my own, and smiling next to the musician who helped make glasses not only cool to wear, but part of mainstream media. May his legacy never fade.

***special thanks to my friend Claudia for taking this picture and listening me go on and on about how cool Buddy Holly is.  This photo was taken at the National Portrait Gallery in Washington, DC ***

My Blindness Cane

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It’s the ultimate statement accessory. No matter what you wear with it, it’s always the first thing people notice. You can’t leave the house without at least someone making a comment on it. And when you don’t have it, people will ask why.
The accessory I’m talking about today is not some necklace, a pair of shoes, or even a pair of glasses. It’s a blindness cane, or white cane. I started using one regularly when I started college. I resisted it, because I wanted to pretend my vision wasn’t actually getting worse, but after I became known as the girl who fell down the stairs, twice, during freshman orientation, I realized that I needed it more than I thought I didn’t. In the year and a half I’ve used it, I’ve gotten so many bizarre comments, assumptions, and questions from people around me. Quite simply, people don’t know a lot about canes.
One time, an employee at a bagel place I went to with my friend pulled her aside and asked why I could see when I had a blindness cane, and started asking how well I could see. She explained that I had low vision, and while I could see a little bit, it still wasn’t great. I found out about this after we left and while I appreciate how my friend handled it, I was a bit surprised at the employee’s assumptions. Not everyone has to be totally blind to use a cane, and many members of the low vision community use canes to get around. A low vision doctor once told me that you can see 20/20 on the eye chart, but still be legally blind and need a cane to get around, and that’s okay. One does not have to see, or rather not see, a certain percentage to get a blindness cane. If they need it, they need it.
I have other well-meaning people tell me about their friends or family members with low vision or blindness who get around without canes perfectly fine. That’s amazing, and I am always so impressed when I meet people who can do that. Sadly, I can’t tell the difference between flat ground and stairs, so the cane really isn’t something I can go without. Every person with blindness or low vision is different, and it hurts when people start questioning how well someone can see. Another thing that is equally annoying is when random people approach me and start doing a makeshift eye test to see how well I can see. When you look like society’s view of normal, suddenly it’s hard to believe that you could be wearing such thick glasses and everyone turns into an eye doctor, trying to diagnose what’s wrong with you and if you really need that cane. And while it is well-meaning, I don’t like hearing that I’m too pretty to have to use a blindness cane either.
My best way of fighting the stigma of using a cane is to answer anyone’s questions or concerns about me using one in the most polite, appropriate way I can at the time, even though that may be difficult sometimes. Humor really helps, especially when the questions get crazy. Some odd things my cane has been mistaken for include a selfie stick, a lighter, a sword, a knife, a golf club, and a pair of mallets when it was folded up. My typical reaction is to smile and explain it’s a blindness cane and not whatever object they thought it was. When little kids ask me why or how I use my cane, I tell them I don’t see the world like they do, and for especially curious ones, I have them grab down on the bottom segment of my cane and I move it around to show them how I feel different vibrations. And for the strangers on the metro who ask if I can see them, I just say I have low vision.
While there are some days I wish I didn’t need it, I am glad I have my cane. When I first started using it and ran into former friends who told me I was exaggerating about my vision being so bad, I considered trying to go without it. But then when my cane alerted me to a pothole ahead of me, I realized how helpful it is and how much I need it. I can’t imagine going anywhere without my cane, except maybe face first on the ground or into a wall because I didn’t notice something. My cane has helped me see more of the world than I ever imagined, and for that, I am grateful. So although it is a statement accessory that says I have low vision, I try to rock it the best I can. After all, I am not my disability or my assistive technology- I am a person who just happens to have a disability and uses assistive technology.

My Blindness Cane

Falling Through The Cracks

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I’m currently typing this from the Metro on my way back from a conference all about inclusion and encouraging underrepresented populations to go into technology related careers. As a result, I have been thinking a lot today about how fortunate I am to have been able to graduate from high school, go to an amazing college, and have encouragement from my family and friends. I recognize how privileged I am to have these things, and am grateful for them every day.
A man sat next to me on the metro and held up a sign in front of me that I couldn’t read. I smiled and they started signing to me. He was completely deaf, and homeless. I used my basic sign language that I learned from a friend and said that I have low vision and can’t read what their sign said, and gestured to my blindness cane which was unfolded next to me.
After I did that, they pulled out a sharpie and a piece of paper and wrote that they were sorry for shoving something in my face that I couldn’t see, and then asked how I was treated in school. Since this goes past my signing capabilities, I pulled out a notebook app on my iPad and explained that I had to fight for my accommodations but was very fortunate to graduate from high school and come to college up here.  It was hard to receive services sometimes because the school decided I was so high functioning, I shouldn’t need their help. They wrote that they were one of the people who fell through the cracks, who was told that they were stupid because their hearing impairment wasn’t identified until after they’d already dropped out of school because they were failing. No one thought to test him for having hearing loss, they thought that he was just plain dumb. I mentioned that my goal in life is to make sure people with disabilities get equal access to education and are able to succeed, and how I want to tell all students that they belong. His dream is apparently to be an architect. Before I could type out a response, he got off at the next stop, but not before signing to me “you are important.”
Cases like this are not unique. My mom would always tell me I wasn’t the only child in my class who had problems seeing, and that so many other people went undiagnosed or misdiagnosed with other issues. It’s hard to realize there’s a problem, especially as a child, because it’s easy to think that there isn’t a problem after all and that everyone is like this. I remember meeting a staff member at an Apple Store back in eighth grade who noticed I was looking at the iPads and enlarging them, and told me how he had a lot of trouble seeing and had to drop out of school, abandoning his goal of becoming a computer science major. Adults aren’t always trained to identify problems either, or they are brushed off and told that there’s nothing that can be done.

If it wasn’t for my mom pushing for me to receive services back in kindergarten, I easily could have fallen through the cracks too. These people drop out of school because they believe learning is inaccessible to them and that there’s nothing they can do about it, when in reality all it takes are simple accommodations to help someone shine, especially when it comes to finding employment opportunities.
As I finish typing this back in my dining hall, I am grateful that I was able to succeed and having so many people advocate for me, but most importantly, teach me how to advocate for myself. I know I have a great amount of privilege, and I want to help others by giving them the assistive technology that they need to thrive. As one of the speakers said in the conference today, “opportunities don’t come unless the accessible technology comes with it.” As I like to say, I might not be able to change the entire world, but I might be able to change the world of someone who was struggling before. Although right now, I feel like I can conquer anything.

FALLING

Don’t Call Me Vision Empowered

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I have low vision. I’m not afraid to say it, because I do not know what life is like being able to see like so many others do, and I have to remind others of that. I am extremely open about my vision loss, and never get offended if a young child on the metro, a new friend on campus, or even a total stranger on the street wants to know how I use my blindness cane or my different assistive technologies- in fact, I explain to them how I do to the best of my ability. I refer to myself as being visually impaired, having low vision, or having vision not corrected by glasses. Never will you hear me refer to myself as being “Vision Empowered.”

I first heard that term use to describe someone while I was talking with someone in Washington, DC one day. I thought it was one of the craziest things I’d ever heard, as it discounted the fact I can’t see well. At first, I thought that this was a random person who made up a term, but I heard it mentioned in many conversations I had with people in the following weeks. It sounded like people were trying to deny my disability or modifying words to avoid hurting feelings.

I have a theory that this phrase was coined by parents that were upset their child couldn’t see and wanted to make them sound like they were better than other kids. It’s the same parents who dress their kids in shirts that say “I have insert disability here, what’s your superpower?” The ones who try to deny problems are as bad as they are. The ones who want the world to accommodate their child, and don’t tell the child what to do when the world isn’t the way they need it.
I could hear my mom roll her eyes over the phone when I told her about being referred to as vision empowered. She has never been one to tell me the world is an accommodating place, one where everything is large print and with light filters. Instead, she taught me how to make the world accessible for myself and to be a fierce advocate for myself and others. One thing I really appreciated is that she never told me I couldn’t do anything because I had low vision and let me do whatever my sighted brother and sighted friends were doing…with the exception of driving. She told me “I could see someone describing you as empowered, but not vision empowered. That just makes you sound stupid.”

I told a group of close friends who are sighted about the term as well, and they all couldn’t believe that the term existed. One friend told me it made me sound like I’m the type of person who demanded that there be Braille on a drive up ATM. If someone introduced themselves or if someone was introduced as being vision empowered, they told me that they would wonder what that meant and it would create more questions about what the person’s level of vision was than it would create answers, while terms like blind, visually impaired, or low vision are self explanatory.

To say I am vision empowered is to talk down to me and say my accomplishments only happened because I have a disability. It is to discount my low vision and say that it’s not as bad as it actually is, or that life will always be easy. Even worse, it is to see me as my disability and permanently associate everything I do with how I see.  I am okay with the terms low vision, visually impaired, vision loss, and many others, but not being told my vision loss makes me a more empowered or special person.

The only time I want to hear the words vision and empowered together in a sentence is if someone says “The inspirational life you live with low vision empowered others to follow in your footsteps and succeed as well.”

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