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!

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.


 

Learning to Self-Advocate

On my IEP throughout high school, one of the top goals was for me to learn to self-advocate.  When I was younger, I viewed this goal as meaning that if I had a problem, it would mean that no one would be available to help me and I would be stuck with dealing with everything by myself.  That was not the case, as I had so many people to help support me.  I’ve learned a lot about self-advocacy, and I hope that I will be able to help others learn as well.

What is self-advocacy?

Self-advocacy is learning how to speak up for yourself, as well as learning, building a support network, problem solving, and knowing when to reach out for help. It’s an extremely important skill to have, as there may not always be someone with you when a situation comes up. This skill has greatly benefitted me outside of school, in college, and beyond.

Learning to speak up for yourself

I do not like causing conflict or hurting people’s feelings, so it was hard for me at first to point out that a situation was unfair or that my accommodations were not being followed. In one of my classes, the daily warm-up assignment was never enlarged, so instead of arguing with the teacher every day, I would walk into class and read a book on my eReader until the rest of the class finished with the assignment.

No one can hear you unless you speak up, so make sure to let the teacher know if assignments are presented in a format that is not accessible for you. Also make suggestions on how to make it accessible- enlarging exponents, using different colored pens and papers, digital formats, or anything else you can think of.

Learning

In college, I met another student with low vision that didn’t know anything about the services they received in school. They told me that their parents and teachers handled everything, and they couldn’t tell me what accommodations they received, just that they needed them.

Familiarize yourself with what accommodations you receive. What font size can you read? What color paper works best? What assistive technology do you use? What apps do you use, and on what platform? Do you receive extra time? Are tests in a one-on-one environment? Learning how to explain your accommodations simply and clearly is important.  This information will be very helpful when it comes time to create a Disability Services file in college.

Building a support network

With my IEP, I had three case managers in high school over the course of four years (I attended two high schools). They were specifically picked for me because they were great with helping students learn to self-advocate- they wouldn’t sit there and yell at my teachers over trivial things or constantly hover over me. Instead, they would step in when there was a problem I needed help with. My guidance counselors were also incredible resources, as they would listen and move me out of classes when necessary, as well as be some of my greatest advocates in IEP meetings. In addition, each of my high schools also had an assistant principal who would handle the cases for students with IEPs, and the principal was helpful as well. The central office of my school districts listened to my concerns when situations were too much to handle.

I also had family and friends to help me through smaller situations. My parents, especially my mom, would attend every IEP meeting and help make sure that I was thriving in the educational environment. My parents have always been very encouraging of my goals as well. In the classroom, I also had friends that would help me advocate for myself so I didn’t feel as nervous. In a class where the teacher regularly did not enlarge my work, one of my best friends was always right behind me whenever I went to ask the teacher for my assignments, so when the teacher started telling me that I didn’t need large print, I would feel more confident in reminding them that I do and I would be less likely to back away.

Problem solving

Learning to solve minor problems on your own can be extremely beneficial. I learned how to scan in and enlarge assignments, make documents accessible, and type my own notes when there were no prewritten notes available. This meant that I was still able to participate in class even if my IEP wasn’t completely followed, and it meant my grades were higher because I missed less assignments.

Some posts that may be helpful include my posts on testing accommodations, accommodations for print materials, and what I’ve learned about print disabilities.

Knowing when to reach out for help

In one of my math classes, I had a teacher who did not believe I needed large print, as they assumed my glasses corrected my vision to 100% and it was a waste of their time to enlarge things, despite the fact I had an IEP. I thought I could handle the situation myself, and didn’t tell anyone how badly I was struggling in the class. I didn’t use any assistive technology regularly at that time, so it should be no surprise that I failed the class.

As important as it is to try and handle situations yourself, you have a support network for a reason. It’s important to let someone else step in for situations that involve the law being broken, threats, or when you’ve tried everything you can think of. This isn’t failure to self-advocate though, as an important aspect is remembering when to get help.

————————————————————————–

Self-advocacy is one of the skills that I am the most grateful for. Because of this, I have been able to go on to attend college, confident in myself and my abilities, but still knowing where I need extra help. I will always be grateful for the people and experiences that helped me develop this skill.