Disability

Having a Disability During the Time of the Coronavirus

In December, I boarded a cruise ship with my family for a New Years vacation, completely unaware that the Coronavirus even existed. Now, in March, I sit in my home in Atlanta, GA, completely aware that the Coronavirus exists—and afraid of its effects. 

 

Just a week ago I was returning home from a two night venture to Charlotte, NC to visit the college I will be attending next year (which has since closed for the rest of the semester), and I was looking forward to flying to Florida to visit my friend. Today, over a week later, it’s Wednesday, and I haven’t left my house since last Monday. My last big hurrah was venturing out to the Container Store with my mom, before we decided it would be best to self-quarantine. Since then, I’ve slept a ton (when I’m not laying in my bed at two in the morning, too anxious over the Coronavirus to sleep), watched an over abundance of Tik Toks, and attempted to read a book—but I’m too preoccupied to dutifully concentrate on that. My life has been flipped around in a matter of a few days, and it is only a matter of time before everyone in the entire country’s life does, too.

 

I’ve lived with decreased lung capacity for nearly a decade due to my disorder, Acute Flaccid Myelitis (AFM). And I know I’m not the only person with a disability or underlying health condition who is frightened right now. Many of my friends with disabilities have been stuck in their homes, anxious about their health because there isn’t much we can do except wash our hands. We have all watched as our friends without disabilities and underlying health conditions have ventured off to the Caribbean, on cruises, and to Europe, ignoring the fact that staying away from other people is what we should be focused on right now. Experts stand by the fact that social distancing is the best way to flatten the curve; or, as OPB puts it, “slow the spread of the virus, so that you don’t get a huge spike in the number of people getting sick all at once.” There is no point in those of us with disabilities and underlying health conditions engaging in self-quarantine if those around us do not do their part. When a family member of mine returns to the house, they bring with them the germs of every surface they touched and every person with whom they interacted. Of course, this always holds true, but this fact is even more worth taking into account during this global pandemic. According to the Boston Globe, many people in Italy (which is now on lockdown) “could have taken a simple yet morally loaded action: [they] could have stayed home.” 

 

While there are numerous people arguing that the Coronavirus is not a big deal and “only” three percent of people who contract it are dying, it is imperative that we recognize that it is a big deal. I’m quite sure that those who are pushing the “only three percent” narrative as a means of reassuring others this virus is not a big deal would care once it became their own loved one. And, frankly, numbers should not matter here, because every life is valuable, and one person dying should be enough to cause concern. Think of it this way: @MrDre_ on Twitter said, “If I gave you 100 skittles and told you 3 of them could kill you… I’m sure you would avoid the…skittles.” Those who are worried for their own health or their loved one’s health are rightfully so and should not be belittled or have their concerns invalidated by others who don’t understand the severity of the Coronavirus or value the lives that have been and will be lost. Those fifty people in the United States who have died due to the Coronavirus are someone’s family members and friends—not merely a statistic. 

 

Of course, nobody wants to stay holed up in their house for days, weeks, or months on end. But if we continue to act like life is going on as normal and attend social gatherings, go out to lunch, shop, etc., then the amount of people who contract the Coronavirus will only steadily and exponentially increase.  Schools are closed and many are working from home for a reason—and that reason is not to simply have free time. It is to protect and save lives. And if we don’t all do our part, more lives will be unnecessarily lost, and we could end up like Italy.

Descriptions

What Holocaust Education Means to Me

Today, January 27, 2020, is Holocaust Remembrance Day. 75 years ago, Auschwitz-Birkenau was liberated. Here, I share with you a reflection on how one class, one teacher, and one very important part of history shaped me into the person I am today, and will forever influence who I have yet to become. 

“What we learn is what we become” – my teacher, Mr. Murphy

A set of train tracks runs for miles, meandering through the desolate, bland area. Walking along those very train tracks is a little boy, his arms outstretched, balancing on the uneven surface. His parents watch as he frolics about, playing without a care in the world, giggles escaping his mouth. He is only around six years old, naive and inquisitive; yet, he has no idea of the unfathomable tragedies that took place on these very train tracks.

A man in the building above watches the way he laughs, taking note of the way his shoes land on the ground as he lands his jump. The boy’s presence enthralls him, drawing him in, making him unable to turn away. Before he misses the chance, he pulls out his camera and takes a photo of him, capturing the little boy’s innocent, toothy smile.

This was the picture my teacher showed me on the very first day of my History and the Holocaust course. He didn’t even have to explain why he took the photo; I immediately understood. The image of the little boy playing on the train tracks—the very place where millions of innocent people were brought to their deaths—was so incredibly poignant tears welled up in my eyes. This class was the last class before the school day ended, and I struggled to hold in my tears as I walked to the car. I could only get out a quick greeting to my mom before I burst into tears and told her about the picture. It was my first day of class, and I had already left the room in tears.

Learning about tragedies is unbelievably tough, but I firmly believe in the quote by George Santayana plastered on the wall in one of the blocks at Auschwitz: “Those who do not remember the past are condemned to repeat it.” I first learned what the Holocaust was when I watched The Boy in the Striped Pajamas when I was ten years old. As a child, my first reaction to the movie was confusion. I wondered why the Jewish people were hated so much and how human beings could be so cruel to one another. Even now, I still withhold the same sentiments. I struggle to comprehend how people could treat other human beings with such indignity and injustice. My attempt at trying to comprehend how this tragedy could have happened was taking the Holocaust class, which was the greatest, most informative class I’ve ever taken. I came out of it a changed person—just as my mom said I would.

After learning about the Holocaust in depth, I developed an even larger sympathy for the Jewish people than I had before class. It quickly became my mission to “bear witness”—as my teacher said—to the victims of the Holocaust. I wanted to visit the places where the tragedies occurred to pay my respects and honor the victims, because, although facing the reality of the horrors is unbelievably tough, I tell myself that, just because the tragedy didn’t affect me directly, does not mean I should not have to face it. So, over the summer of 2019, I spent two weeks in Germany and Poland, on a mission to bear witness to the victims of the Holocaust. I visited several sites relevant to the Holocaust, but the most prominent was, of course, Auschwitz-Birkenau. Walking towards the front gate, I was consumed with emotions; it almost didn’t feel real to be standing in front of such a horrific, infamous site. And when I stood on the train tracks at Auschwitz-Birkenau in Krakow, Poland, 5,014 miles away from my classroom where I learned about the Holocaust, I could not stop thinking about the little boy who stood on those very train tracks.

Descriptions · Disability

The Stigma Hurts Us All

          When I was ten years old, I started feeling depressed and having suicidal thoughts.  I was frustrated because my disability, Transverse Myelitis, had impacted my life so much that I felt like I wasn’t “normal” anymore.  Since I was so young, I didn’t completely understand the magnitude of this situation; I thought there wasn’t anything wrong with wanting to die since I was so sad.  But as I matured, I realized that I was so wrong—it wasn’t normal to feel this way, but I didn’t know how to fix it.  All I knew was the last thing I wanted to do was tell someone.

          The obvious person to share my emotions with would’ve been my mom.  We have an extremely close relationship, and I know she loves me more than anything else in the world.  But I didn’t tell her anything. Although I wanted her to know how much emotional pain I was in, I couldn’t ever bring myself to say, “I’m depressed and have considered killing myself,” out loud.  I feared she would worry too much about me and that she wouldn’t know how to help me, because an announcement like that is a lot of weight to put on a mom’s shoulders. I thought she might think of me differently or not understand.    

          It’s a problem that I was only comfortable (and even still a little hesitant) sharing that I was depressed and suicidal after I recovered.  When a family member or friend of mine asks to read my article in the latest issue of J-14, I still get nervous when they come across the section that discusses my mental health.  It’s so, so wrong that I have to feel this way—why should I be ashamed of something I couldn’t help?  Something I didn’t want to be a part of me just as much as my family didn’t? The thought of being judged is scary, especially when it’s over something you can’t help.  There’s such a strong stigma surrounding mental illness—so strong that it stops people from speaking out. The stigma hurts us all. Without the stigma, fewer families and friends would be grieving, and a lot more people would be alive.  If people treated mental illness like they do physical illness, fewer lives would’ve been lost, and more people would be willing to speak out. It’s incredibly worrying that, even though I know my mom loves me with her entire being, I was still too scared to speak out because of people’s ignorance.  I just hope that my choosing to speak out about my past depression and suicidal thoughts in various magazines, articles, blog posts, and dances I’ve choreographed and letting myself be vulnerable makes a difference. Being vulnerable isn’t easy by any means, but the stigma will slowly be defeated the more those of us share our feelings.  It’s time the stigma comes to an end and the anxiety over speaking out is lifted off our shoulders.

 

Disability

Being Recognized As More Than My Disability

          I’ve never been one to complain about things, especially things pertaining to my disability.  That doesn’t mean that I’m completely unbothered by my limitations all the time, though; I simply choose to not be very vocal about my issues.  Every once in a while, when my neck hurts or my legs are tired, I’ll mention it, but not very loudly, and I don’t usually intend for anyone to pay my complaints any mind.  I’m not one to believe it’s healthy to try to pretend I don’t have a disability or anything like that, because I’d only be hurting myself and other disabled people if I tried to hide it, as many able-bodied people would automatically assume that I’m ashamed of my disability.  If anyone knows me well, it’s obvious that is not the case.  In fact, I rather enjoy raising awareness for disabilities and the struggles disabled people face, because I love to make positive impacts on our society.  (We need a lot more of them today!)

          It’s funny (and by that I mean interesting) to me how so many people, especially my friends, forget that my needs are different from theirs.  I suppose if I were more vocal about the struggles my disability brings to my life, they’d be more likely to think of me as someone whose body functions differently than theirs, but I’ve learned that they don’t.  And, truthfully, I like that.  I don’t like it because I think it’s bad to be seen as a disabled person—that’s far from it.  I like it because my disability isn’t the only thing my friends notice about me.  Instead, they think of me as someone who loves Harry Styles and ballet, who loves to write and read and smile.  They don’t forget that I have a disability—it’s just not the first thing they think of when they see me.  I know that part of why this occurs is because my disability is invisible; I don’t look like I have a disability even though I do.  If I required a wheelchair, people would be rushing to my aid, even when I didn’t need it, which could be nice but also severely annoying.  (Or they’d stay away because talking to a person who uses a wheelchair is much more frightening than speaking to a person who doesn’t.  Obviously.)

          At school, when I ask my friends to open my water bottle, they often assume that I only need help opening it because the cap hasn’t been taken off yet.  So, they usually unscrew the cap and re screw it back on before handing it back to me.  Since I already feel like I ask my friends to help me with so much, and often a lot at one time, I always feel bad when I ask them to take the cap off completely afterwards.  It’s stupid, since I’m sure my friends don’t mind taking another few seconds to help me, but I can’t rid the feeling of being a bother.  I’m never annoyed when my friends do this because, like I said, they’re thinking of me as someone who is like them.  I just hate having to ask them to help me again; I never want to be bothersome.

          Other instances like the water bottle have happened before, too.  Once, my friend and I were talking about what we might want to be when we get older.  “I couldn’t be a surgeon,” I said jokingly, confident she would get the hint: my hands wouldn’t allow me to be a surgeon even if I wanted to.  Her reply came, “I couldn’t be a surgeon either; I hate blood!”  To say I was shocked would be an understatement.  I still remember this conversation two years later, and I couldn’t stop thinking about it right after it happened.  She wasn’t thinking of me as someone who couldn’t be a surgeon because of my disability; she assumed I couldn’t stand blood just like her.

          Just like all fifteen and sixteen-year-olds, my friends and I have been eagerly discussing who has their learner’s permit or driver’s license, interested in who can venture off wherever they want already.  I’ve had my learner’s permit for over a year now, so if I didn’t have Transverse Myelitis, I’d probably have my official license by now.  However, I’ve been toying with whether or not I really want to get my license or not since I’d have to drive for at least five hours every day for a week in a special car to learn, then raise thousands of dollars to purchase the adapted equipment I’d need to drive.  Discussing this with my friends one morning before school, my friend suggested, “You could always ride a bike!”  Smiling, I replied, “I can’t ride a bike.”  She laughed, too, both of us clearly finding the situation amusing.  “Oh, right.”  I’m never offended when someone forgets that I can’t do a certain task or suggests I do something I’m not able; in fact, it makes me happy knowing my friends don’t see me as someone with limitations.  It felt nice that my friends didn’t look at me and rack their brains for the activities I couldn’t do because of my disability.  Instead, they saw me as someone who could do anything like everyone else, just maybe in my own way, which I’m thankful for.

Disability

You Don’t Know my Disability As Well As I Do

          As I make my way through life with a disability, I learn what tasks I can and cannot do.  I know I cannot open the fridge with my hand, so I use my wooden spatula to push it open; I know I cannot do my hair, so I ask my mom to braid it or put it in a bun for me; I know I cannot buckle my seatbelt, so I ask my mom, or whoever I’m driving with, to do it for me.

          Oftentimes, when I ask someone to assist me in completing some sort of task, they seem shocked that I cannot do it myself.  There have been times where I ask someone to help me and their response is, “I think you could do that if you tried.”  When this happens, my only response is, “How do you know I haven’t tried?” It shocks me that many other people think they know my body and my disability better than myself.  If I thought I could open my own food, I wouldn’t have bothered asking for help—it’s much more convenient for everyone if I do things on my own, so why would I ever waste time asking for help if I didn’t really need it?

          Because I enjoy being as independent as possible, I try doing things without help often, and I sometimes find that I can do new things.  Most of the time, however, I can go through the process of the task at hand in my head and know if I’ll need help without even attempting it.  

          The bottom-line here is: when I ask you to help me with something, whatever it may be, please trust that I do, in fact, need your help.  I know my body and my disability better than anybody else, and I’m not trying to be lazy when I ask for assistance with certain things that are difficult for me.  

Disability

Why You Shouldn’t Laugh When I Mention Harry Styles

          Let’s face it, everybody that knows me knows I’m “obsessed” with Harry Styles.  It’s easy to listen to me ramble on about how much I love him—or simply mention his name—and get annoyed.  But let me just tell you: there are some things you don’t know that you should.

          Ever since late 2010, I’ve loved, admired, and supported One Direction, particularly Harry Styles.  Posters adorn the walls in my room; my camera roll is full of pictures of them; my lock screen is me with Harry Styles; and I have all their albums on my phone.  To most people, I look like any ordinary teenage girl with a boyband obsession, but that’s not true.  My “obsession” is more than that, and here’s why.

          Living with a chronic illness such as Transverse Myelitis can be difficult.  As a fifteen-year-old girl, I visit way more doctors and hospitals than most people my age, and I endure so many painful tests and experiences that I shouldn’t.  Although I’ve learned to accept that this is the way my life is, things haven’t always been the easiest for me.

          When I was just ten years old, I was battling depression.  At such a young age, I didn’t quite understand why my mind was filled with such dark thoughts of pain and sadness.  There were nights when I would cry myself to sleep and wish I wasn’t alive, or I would think of how to hurt myself while I should’ve been concentrating at school.  I was only in fourth grade and I should’ve been living my life like any normal little girl, but I wasn’t because of TM, which brought on my depression.

          Honestly speaking, I would not be here if it weren’t for Harry Styles.  During my particularly rough bout of depression between 2012-August 2014, I always reminded myself that I had Harry to keep me happy when I needed him.  And so, One Direction’s music blasted through my speakers at my times of crisis, their videos took up my YouTube likes, their song lyrics became my mottos, and I didn’t ever feel depressed when I thought of them.  When I’d start crying myself to sleep, I no longer did so for hours, because the happiness Harry brought me kept me going.

harry book
Harry and I with my first book.

          The greatest moment of my life was when the Make-A-Wish Foundation granted my Wish to meet One Direction in August 2014.  I have never been as happy as I was the day I met them.  All the boys, Harry especially, were so incredibly kind.  They didn’t act bored and simply pose for a picture—they spent valuable time with me and shared conversation.  I presented them with my first book, 5k, Ballet, and a Spinal Cord Injury, and Harry was extremely impressed and enthusiastic.  As Harry and I hugged and exchanged “I love you”s, I knew that I would be happy forever.  Since the moment I headed to their concert with tears of happiness streaming down my face just after meeting them, my depression hasn’t returned.  Who knew it could take so little—a conversation, hug, smile, and “I love you more”— to cure something so big?

MEMORIES

          Aside from One Direction’s music cheering me up, their concerts have been the greatest experiences of my life.  Whenever I need to travel on a medical trip, my mom takes me to see them perform in order to make a not-so-fun trip amazing.  Starting with my first One Direction concert in Minneapolis, I’ve made so many incredible memories on trips that normally wouldn’t have been fun because of One Direction.  They completely changed my outlook on these medical trips, because now, good memories are associated with the cities I visit for appointments.

          My greatest, most memorable One Direction concert was in Baltimore on August 8, 2015, almost a year after I’d met them.  I was there to see doctors at Johns Hopkins Hospital, but having their concert to look forward to made me excited to go to Baltimore for once.  I had been expecting to have a wonderful time, but not this much of a wonderful time.  From the moment the concert began, Harry paid attention to me—he blew kisses at me, waved, gave me peace signs, and communicated with me throughout the entire show.  The best moment was when he knelt down in front of me, pointed at me, and tossed me his towel.  It sounds crazy and stupid to most people that I’d be excited to get a sweaty towel, but the fact that he remembered me almost a year later and so very intentionally gave me his towel (that he normally carelessly throws to the back of the crowd) was simply amazing.  No words other than “amazing” can describe that experience: my favorite singer remembered who I was, read my book, and treated me like I was the only fan he saw in a crowd of 80,000.  It was no surprise I was bawling as I told him thank you, and it was no surprise he smiled back and gave me a thumbs up.

harry baltimore
Harry and I talking at the concert in Baltimore.

          Baltimore is one of my favorite places because of Harry now.  Every time I’m strolling through the city, memories of Harry treating me like a princess come back to me, and a smile makes its way onto my face.

          So … yeah.  You can laugh when you notice Harry Styles hugging me is my lockscreen on my phone; you can tell me I’m too “obsessed” with him, but I hope you understand just how much I need him.  Without him, I might not still be here.  Harry is the reason I’m able to smile every day, and I couldn’t be more thankful for that.  So, thank you again, Harry, for giving me Something Great, helping me Through the Dark, and giving me a reason to keep going.  I’m honored to call myself your most special fan.

 

Disability

Why You Should Think Twice Before Telling Me I’m “Lucky”

          I’ll admit it: I am extremely fortunate.  Instead of staying a quadriplegic like I was at eight-years-old, I’ve made a tremendous recovery, even though I’m not perfect.  I am, indeed, lucky that I’ve regained so much that I once lost—I can walk, move my right hand slightly, and use some parts of my arms.  This is something to be happy about, because I am “lucky” that I’m not still a quadriplegic.

          However, I am not lucky because I get accommodations or privileges because of my disability.  When I got to meet One Direction for my Make-A-Wish trip, I was not “lucky.”  It’s easy to say that I am because jealousy takes over our rational thought, but, really, why do you call me “lucky?”  Would you rather have transverse myelitis and get to meet your favorite band, or would you rather be healthy and not have that opportunity?  The truly lucky ones are the healthy fans that get to meet 1D—not me or anyone else who had a Wish trip.

IMG_4167
Me with One Direction on my Make-A-Wish trip in 2014.

          Meeting One Direction was the happiest moment in my life, and nothing else will ever replace that.  I felt truly happy when I was with them, and you can see that in my eyes.  To me, I deserved that happiness for all that I’d been through.  Those who call me “lucky” due to their uncontrolled jealousy and irrational thought don’t understand the harmful words they’re saying.  Sure, it is not fair that some fans get to meet them while others don’t, but it is unfair to call me lucky for it, because I’ve had to go through medical tests and unpleasant things that you didn’t.  So, who really is the “lucky” one here?

          This situation doesn’t just apply to meeting 1D, either.  If I am more comfortable sitting in a chair than on the floor because my neck hurts when I don’t have a chair, I should get a chair—and having that accommodation given to me does not make me “lucky.”  Skipping the entire line at the Richard Rodgers Theatre to see Hamilton does not make me “lucky,” because I needed to get inside ahead of everyone else since my disability inhibited my ability to stand for extended periods of time.  The phrase “you’re so lucky” works better the other way around—“you’re so lucky” that you have a healthy body that allows you to not need the accommodations I need.    

          I know, it is too easy to get jealous; we’ve all been victims of jealousy before.  I’m not angry at those who tell me I’m lucky; I just want them to understand why they should think twice before telling me that.  Because, really, which choice would you make?  Would you rather be “lucky” that you receive accommodations and privileges due to disability or “lucky” that you’re in good health?  The answer is easy for most.