Month: August 2015

Biking

One of my favorite activities I like to do in my free time is biking. On many days after school, my friend and I would bike down this very steep mile long hill to the park, and then painfully drag ourselves back up. Now that it’s summer, biking to the nearby Dunkin Donuts for iced coffee has become a daily routine. If I’m feeling impatient to walk, the bike always serves as a handy means of transportation to my friends’ house or to Rite Aid. But you may ask, how do I even bike if I can’t see where I’m going?

Here’s a few general tips I follow for my own safety when biking:

  1. Make sure you know the area you are biking in. Personally, I only bike in areas I am very familiar with. When I bike alone, I am usually always in my neighborhood, so I know I will not get lost. Especially because I can’t see street signs, it is important for me to know the area I am biking around inside and out: except for this one time (actually this year)I was at a sleep away program at The College of NJ, and decided to go on a bike around campus on only the second morning. I ended up peddling right off campus. Yeah, I don’t suggest you do that, because I was out baking in the sun for hour and missed breakfast. Well, there’s still always Google Maps too, but I can’t bike with one hand.
  2. Know yourself and your eye condition enough to decide when you should and shouldn’t bike. For me, I am almost completely blind once the sun goes down, as I literally can’t see ANYTHING in the dark. I also know that when the sun is shining too brightly, and if I take a path surrounded by many trees, I will not be able to distinguish grass from pavement because the patterns of shade and light dominate my field of vision. Hence, I try to always bike before 8 PM and take a different path with less trees if the sun is too bright.
  3. Be ready to press the breaks in a split second. I literally have my hands resting on the breaks when I bike, especially when I am flying downhill. When I am going fast, there is a huge possibility, that I will encounter a person or something in my path that will only cross my field of vision when they are right in front of me. Lucky enough for me, I haven’t gotten into a bike accident yet, but there have been several incidents where people have had to jump out of my way as I came barreling down a hill because I didn’t have my hands resting on the breaks and failed to see them in time to react. Not very polite.
  4. Always pay extra attention to your surroundings. Most people go on a bike ride very chill and relaxed, but as a legally blind, you always be very alert. Especially when biking down a hill, I am straining to detect any noises to signal nearby people and concentrating only on staying on the path ahead. Once I was riding smoothly down a hill, debating in my head which coffee flavor I would get when before I know it, I’ve veered off onto the grass and am headed for a collision with a giant tree. I swerved out of the way in time to avoid a fatal injury, but the experience did make me realize the importance of focusing my eyes on where I’m going.
  5. Always wear a helmet. Nuff said.

I hope you found some of these tips useful or at least somewhat entertaining. I wanted to express that just because you are blind or visually impaired, it doesn’t mean you have to give up the activities that you love. There’s always ways around your eye condition, you just need to be patient and willing to be flexible. And of course, always look on the positive side. Although I can’t join my friends for a midnight bike around town, I am still lucky enough to ride up and down the hills in the daytime, even if I do need to pay more attention and use my breaks more than other people do. Don’t let your eye condition prevent you from enjoying life and doing what you love. 🙂

First Real Experience with an Aid: Camp JumpStart

The summer before middle school started, I did manage to attend an academic-like summer camp, except it was more of a fun “ease your anxiety about middle school” experience than an accelerated and rigorous summer school. Basically at this camp, called Camp JumpStart, students would attend a few periods of classes each day for three weeks to simulate the real middle school experience. And because the goal was to create an identical environment, the school felt the need to…get me an aid.

In my head, I was appalled by the idea, but clearly, I had no choice.

To my aid’s credit, she actually did listen to the request of “please hire someone who won’t be my personal tick”. On the first few days of Camp JumpStart, I literally had no idea who my aid was. Because she didn’t introduce herself as “Kristie’s very own aid”, I thought she was an assistant teacher that just so happened to be in each of three classes. She didn’t follow me to snack time or hover over me when I was at my locker (thank god). At time, I even forgot that I had an aid. If having an aid was like this, I thought, I could manage.

Unfortunately, that didn’t last for long.

By the end of the first week, as we started getting handouts that needed to be enlarged, I finally figured out who my aid was. Also by the end of the first week, my good two shoes façade began to fade, and I began acting more like the unruly child I was. I was used to doing whatever I wanted, even if it meant breaking a few minor rules, as long as the teacher didn’t notice. But when you have a personal aid to watch over you all day, it becomes quite difficult to fly under the radar. One day, we were each given skittles as a part of a science lesson. We were told not to eat them until the end, but of course, being the hungry animal I am, I didn’t listen. When the teacher turned her back on the class I quickly sneaked one, just one into my mouth, without anyone noticing. Well at least, that’s what I thought. A few seconds later, my aid swoop in on me and condemns me for eating the skittle, giving me a nice long speech about following rules and how I would have earned myself a detention if this happened during the school year and crap. I wasn’t angry because she had caught me breaking the rules, because I knew I wasn’t supposed to eat. But what literally drove me insane beyond belief is how just about everyone else in the class also ate a skittle or two as well, and no one else was caught. I’m pretty sure the teacher saw a few some of the not so discrete people, but didn’t really care. Because I had an aid though, I had to follow every single rule.

The next clash with my aid came at the Liberty Science Center, one of the field trip destinations at our time in Camp Jump Start. The campers were split into a few different groups, but with my luck, I had no friends in my group and was bored out of my mind for the first half ot he day. I figure the groups were pretty large and no one would notice if I snuck into he other group instead- I mean, I did that all the time in elementary school no problem. So that’s what I did after lunch. Yeah, not smart; I should have figured that because a had woman whose job was to follow me around on this particular day, she would have freaked out if I went missing.

And freak out she did. She sent the whole group on a half an hour-long hunt for me and when finally found me hanging out in some tunnel, she flipped out. I was dragged outside and was told that I had to stay within her sights at all times. I think its fair to say that after that day, she made me feel like a prisoner and I hated her for that.

I think the reason why I struggled so much with having an aid was because I wasn’t used to following the all the rules. I was always on the more wild side; I never did anything too outrageous, but I did have a tendency to push the boundaries. Personally, I felt it was so unfair that I was forced to be a bored goody two shoes while my friends were having a blast and exploring “dangerous” waters. I literally felt like I had a parent with me in summer school: a place where I should have been allowed to be a kid.

TIP: In hindsight, my Camp JumpStart aid did exactly what her job called for. I think that at the time, I was just not accustomed to being watched so carefully (even at home, my parents are on the chill side). Experiencing an aid for the first time is always going to be an adjustment, and it’s very important that you are patient and communicate with your aid. Now, I personally feel that it is the teacher’s job, not the aid’s, to call out students for bad conduct, like eating a skittle, unless the situation involves a serious issue, such as cheating, stealing, or disappearing (yes, my aid was right to yell at me at the museum). If your aid makes you comfortable in any way, it is crucial that you sit down and bring your issues up to her in a polite manner, as she or he may have no idea that they are doing something that bothers you if you don’t speak up. Remember, a student’s relationship with the aid depends on the efforts of both people and it is ultimately up to you to make the partnership work.

Dilemma

After fifth grade ended, I was in a bit of a dilemma. When my fifth grade report card came out, and I compared my mediocre grades with my friends, I suddenly realized that I wasn’t good at anything anymore. Before I developed my visual impairment, the main edge I had over my peers was my high level of academic achievement. I was also pretty good at sports such as tennis and volleyball. Even regarding the typical recess and gym games, like four square and kickball, I would be among the MVPs. But some things just require vision. But it didn’t matter to me that much if I now sucked at these elementary school games, as long as I was still smart.

But when fifth grade ended, I realized I was no longer one of the geniuses of the grade. I didn’t know what to do. One part of me urged me to ask my parents to enroll me in some academic camps, or to buy me some more math books so I could do what I did in the past and get ahead of the grade. I wanted to be that smart girl again, who already knew everything that was being taught and the one who had no questions and got everything right.

But another part of me was plagued with self doubt. When I would have that sudden burst of motivation to get ahead, a little voice would surface and whisper, “Kristie, what are you thinking? Why are even thinking about being the best when you know you’re just not smart enough anymore?”. Then, I would recede back into my computer games, embarrassed that I even considered being the top again. I was also petrified of revealing to my parents my yearning to get on top; I didn’t want to hear their skeptical comments or another speech of my unrealistic expectations (They never would put me down intentionally, they were just very down to earth people and tended to expect the worst). Of course, I knew that regardless, they would support my desire to work hard if I brought it up, but the last thing I wanted to do is disappointed them.

This went on throughout the summer:the vacillation between wanting to excel and feel smart again, and my fear of failure and embarrassing myself. Eventually, I did the thing that made most sense in this situation, and decided to waste my summer chilling with my friends at the pool and making bead bracelets. Smooth, Kristie, smooth.

TIP: Fear of failure is one’s worst enemy. Never let this hold you back in your pursuit of your dreams. Just think, if you don’t try, there’s no chance that you’ll achieve what you want and you will always be plagued with the “whatif I tried” thought. Even if you try and fail, you will be at peace with yourself in the fact that you gave it everything you had and you can move on in life with no regrets. The fear of embarrassment and the judgement of others is also deadly and has held me back in many walks of life. When working toward something you really want, disregard everyone around you and remember the end goal. When you are unsure of what course of action you should take, take a minute and consider the long run and where you want to be in a few years. When debating whether I should spend my summer working toward future academic success or to just hang out, I should have thought about what I really wanted: a successful school year, or the temporary relief of avoiding potential failure or embarrassment through short term gratification .

High Expectations Gone Low

In the modern day, society has universally placed low expectations on blind people. The stigma that blind people aren’t as capable as their sighted peers or that blind people have too many limitations that hinder the possibility of accomplishing anything significant is all too common. Acquaintances question our ability to perform the simplest tasks, such as pouring a glass of milk. I have even gotten “Wow! You’re legally blind and you’re still in school?!?!” (no, I haven’t dropped out dude, I’m doing quite well actually). When we are to collaborate with our sighted peers on a project, either in school or at work, all too often we are excluded and given the least amount of responsibility due to others’ skepticism of our capacity. When in public, others feel the need to treat us as if we were children, speaking to us differently and doing everything for us, from carrying our bags to letting us cut to the front of the line (which can sometimes be nice, but unnecessary). Once at an airport, a worker brought a wheelchair over to me and offered to push me to my dad. Um, I may not have vision, but yes I do have two functioning legs.

I know people are just being nice and looking out for us. I understand that sighted people feel this way about us because if they themselves were blind, they would have no idea how to survive in such a sighted world. But when everyone believes you’re incapable and inferior, you start to believe it yourself. Especially if even your parents share that feeling.

Before I was diagnosed with Stargardts, my mother held the highest expectations for me. I was raised to be Harvard’s next valedictorian, or someone of that caliber. When I was five, I was the child who stayed in the library completing third grade level Kumon packets while everyone else was on the playground. I was the child who was given books upon books of advanced math books, learning how to multiply double digits before my peers could even do so with single digits. I was the child who was pushed to practice reading and writing Chinese until I was the top of the class in Chinese School every year. My parents wanted and expected me to be on top in everything I did, and I lived up to their expectations. But more important than the high marks and the excellence awards, I felt smart and great about myself.

But when I became visually impaired, I could feel things changed. My parents didn’t outright tell me, but I could sense a shift in their attitude. Within a month of my diagnosis, my mom took me out of Kumon and decided I would no longer continue in Chinese School. Unlike in the past, where my mom would assign me loads of math every day and then scrutinize the work I did each night, my parents told me “Kristie, you don’t need to be the best. As long as your not at the bottom we’re happy”. Initially, I was of course ecstatic that I could go outside and play now with my friends and play in my room without guilt. But after a while, as the academic lead I built slowly waned, I began to question my parents’ sudden change. When I asked, they told me “oh, we just don’t want to tire your eyes out with work and make your vision worse”. This left me feeling powerless, and that because of my eyes, I could no longer better myself. As my peers began surpassing me in skill level and grades, I started doubting my ability for the first time. This was reinforced near the middle of fifth grade when the math supervisor came into our class to pick out outstanding math students for CML. Before my visual impairment, I would have had no question that I would be among the top group, but sitting there that day, I just had an impending feeling of doom that I was not amongst the chosen. And I wasn’t. Literally half of my class was selected for CML but I wasn’t.

I think I went home and puked that day. Watching all my friends file out the door with the math director made me feel more miserable and inferior as ever. I had gone from being the cream of the crop to amongst the bottom half. I no longer felt that I was smart, and this became a self fulfilling prophecy. As fifth grade drew to a close, I saw my grades take a slide from my previous all A+’s (they were still reasonable). My parents claimed they were “so proud” of me for my grades, but deep down, I was positive that if I were still sighted, those marks would have gotten me kicked out of the house.

Just kidding, but you get the point.

TIP: This is mainly geared towards parents: you need to show that you believe in your kid, regardless of what happens. It is unnecessary to treat them any differently after they are diagnosed with an eye condition, as this will allow them to assume that their disability will limit their abilities in more ways than they actually do. A child’s perception of how their visual impairment ill effect them will always stem from their parents’. Just because society has a certain view of blind people, doesn’t mean its true: there are plenty of successful blind people in the world (the one I admire most is professional runner Marla Runyon, who also has Stargardts). Raising a generation of blind youth that can defy the limitations society places starts from a child’s own belief in their capability, which is influenced most by the parents’ attitude.

Having an Aid for the Day

As the last few months of elementary school came about, I heard talk of the idea of getting an aid for me in middle school. When I say heard, I mean my parents tried to have a mature discussion with me about it, but the minute I heard “Kristie” and “aid” in the same sentence, I left the table. I think my parents got the point: NO AID FOR KRISTIE. But they ended up requesting one for next year anyways.

I was very reluctant to comply, but gave in when I realized that I wasn’t interested in rolling around a huge CCTV around the school. I figured I’d also need someone to enlarge my papers and tell me what’s on the board if I didn’t want to drop out of school (I didn’t have a lynx at the time and could barely use the CCTV).

One day in fifth grade, I’m going about my usual routine and working on the math workbook when in comes a lady. She grabs a chair and plops right next to me. Confused, I glance at my teacher for reassurance, and she tells me that since I was getting an aid next year, the school wanted me to experience life with an aid for one day, to see if I really needed one or not. Right off the bat, this threw me off my game, as I found it impossible to concentrate when someone was watching my every move. Her face was only a few inches from mine, and her piercing eyes stared unblinkingly at my workbook, following my every pencil stroke. So obviously, as I was uncomfortable to say the least, I got a problem wrong. And just as I was about to fix it, my day aid slowly moves her eyes to penetrate my face and shoves a finger on the incorrect answer.

I think it’s fair to say that I’ve never wanted a day to go by faster.

The scariest part of this whole aid experience was that she pretty much didn’t say a single word to me the whole entire day. When I asked for an aid that didn’t talk to me, I didn’t mean it literally…

But on the bright side, the experience made me realize that I did need an aid. For the whole year, my fifth grade teacher would enlarge all my papers and make the screen extra large for me. I was lucky enough that in this classroom, the front row was right up against the screen, so I could see the board and take my own notes. But on this particular day, my teacher didn’t give  me special treatment, and I needed my aid to enlarge the handouts and write down the homework that was written in green instead of the usual black. Hence, I realized that in middle school, my teachers wouldn’t go out of their way to accommodate me anymore, and not the classrooms would have an ideal seating arrangement. Coupled with the fact that because we changed classes in middle school, I would need someone to help me carry all my enlarged textbooks and equipment, an aid was something I now knew that was unavoidable for my future.

Did I finally accept that I needed an aid? Yes. But did I like it? No.

TIP: Having me test out how things were like with an aid for one day before getting me one full time was a very smart decision. This gives the student a taste of what having an aid will be like, and allows them to see what works and what doesn’t work. For example, if the student spends a day with an aid that is quieter and leaves the kid alone, and realizes that he or she needs someone who is more involved, this can be taken into consideration when hiring the permanent aid. Thanks to this experience, I now knew that the best aid for me would be one who was a little more social and left me alone when I was doing my work. This is much easier than finding out that a partnership doesn’t work after the aid has been hired, and having to go through the whole process of changing aids. Additionally, I would advise that if a student is reluctant to have an aid as I was, that all adults including parents and teachers refrain from accommodating them   too much, as this will make them realize the importance of getting one.  

You Hate Me Because I’m Blind…?

Although I did handle the last year of elementary school rather maturely and gracefully, I did encounter the first demons that come with being visually impaired. For the first time, I started experiencing occasional moments where waves of shame and inferiority because of my eye condition would envelop me. This was facilitated by some of my not so accepting peers.

Whenever we had silent reading time, and if my book was not available in audio format, my teacher would allow me to choose a friend to read the chapters aloud to me in the hallway. Usually, a good handful of people would excitedly volunteer to help me. I would always choose my best friend and we joked around and gossiped more so than read. However, midway through the year, we transitioned to literature circle books, in which a different book was given to each small group of five. Unfortunately for me, I was stuck in the group that contained all of the “cool and popular kids”, the members of the “in group” everyone longed to be in at some point or another. This was also the group that had no interest in associating themselves with a blind person. When it was time to read, none of them volunteered to help me and instead exchanged glances at each other until my teacher came over and randomly selected one of the girls to take me into the hallway and read. The girl shot me a icy cold lingering glare before unleashing an exasperated sigh and reading in the quickest and most monotone manner she could muster. After she had finished the assigned chapter for class, she started reading the homework chapter- not aloud, but to herself.

That day, I realized that in this world, there are both nice and not so nice people.

Never before had I felt like such a burden that needed to be catered to like a child. Never before had I felt lesser to anyone else because of my visual impairment alone. Never before was I so ashamed of something out of my control

Unfortunately, an even worse incident took place.

There was a boy in my class who was my friend’s friend, but I did not know him very well. Up until the fifth grade, he was always polite to me when we did occasionally cross paths at parties or during recess. Yet after hearing of my visual impairment, I noticed a dramatic shift in his attitude; during recess, he would try to latch on to my friends and try to convince them to play games that blind people obviously would struggle at, like hide and seek. When he was paired up with me to complete a worksheet, he adamantly requested to switch partners and made sure to express his joy and relief when my friend traded places with him. One day, my friend was planning a birthday party in which both he and I were invited. I overheard her tell my other friend that he wouldn’t be coming: the reason being that “he doesn’t want to be there if Kristie is there. He hates her because she’s blind”.

After hearing that, my fury towards that boy erupted. I made sure to express my hate of him loud and clear, and took every opportunity to make a nasty remark to his face or insult him in front of his friends. Even on his yearbook at the end of the year, I wrote “I HATE YOU” in a thick black sharpie (the deed was replicated on his part). I was not the bigger person here, and instead of letting the matter go and focusing on myself, I devoted an excessive amount of energy to getting revenge on him. But now as I look back, under all my rage was a layer of hurt. His comment had sliced a deep wound in my ego and perception of myself, as I increasingly found myself ashamed of having a visual impairment and hiding my blindness when meeting new people. BUt even beneath all that, I sensed a building fear and paranoia of not being liked and accepted by people, for reasons that extend beyond my eye condition, that still plague me today.

Out of all the comments made on my eyes, this was by far the one that lingers in my memory most. The fact that someone hated me not because of my personality or behavior, but because of my eye condition made me feel like for the first time that my blindness defined who I was. I feel that these two incidents really did stick with me throughout my middle school years and heavily contributed to my future denial of my visual impairment and refusal to ask for help.

TIP: Let’s not sugarcoat the fact that there will people in this world that are naïve and unaccepting who will condemn you for your blindness. Unfortunately, reality is that there will be people who will put you down and you can’t control what other people think or do. However, it is up to you to not let these people affect you, and instead use this as motivation to prove people wrong. Although other people’s comments may be upsetting, you need to realize that dwelling on them is not going to get you anywhere and the best thing you can do for yourself is to forget about them. Thinking positive will definitely help with this. For example, instead of holding a grudge against that boy who hated me for being blind so much so that he didn’t want to be at the party as me, I should have focused on the amazing friend I had who still invited me even even if I prevented her other friend from showing up. You should also try to avoid those types of people instead of trying to make them like you or going to extremes to get revenge on them as I did. I cannot stress the importance of surrounding yourself with those who love you most for who you are. Society can be cruel, and although you may not have control over others’ actions, you do have the control to turn negative comments into fuel to push you forward in life and make you stronger.