My Simon Mall Experience As Someone With a Disability

About a month ago, my boyfriend and I went to Haywood Mall in Greenville, South Carolina, because it was the closest mall to us with an Apple Store. As someone with a disability, going to the mall is a pretty huge ordeal because it’s difficult for me to walk long distances before I either become too tired or am in so much pain that I can hardly move. Two years ago, I bought a mobility scooter to make things like a trip to the mall way less daunting, and it has seriously made a world of difference in terms of my independence. However, on this particular day, my scooter wasn’t properly charged, thus making it useless for our weekend mall excursion. Therefore, onto the mall we went, knowing that upon arrival we’d need to locate a wheelchair since the particular mall we were going to was the largest mall in the state (of course).

Upon arrival, I pulled up a map of the mall, which explained that the Customer Service desk where the wheelchairs were located could be found inside of Macy’s. So, off we went into Macy’s, but upon finding the customer service desk, we were informed that wheelchairs were no longer located in Macy’s and could now be found outside of Belk’s. With a sigh of frustration, off we went, silently hoping that Belk’s was not on the entire opposite end of the mall. As someone with a physical disability….long distances (especially when walking) are not my friend whatsoever.

With as much stamina as I could muster, we made it to Belk’s (which thankfully was not on the other side of the mall). However, as we surveyed the area, we realized….no wheelchairs here either. What the crap! By this point, my boyfriend was becoming really frustrated, and I wanted to cry. I knew I needed to rest, my back was killing me, and I needed a damn wheelchair. Out of the corner of my eye, I spotted a mall security officer and kindly asked him if he knew where I could find a wheelchair. He then took us to a long, obscure hallway right next to the entrance to Belk’s (which we definitely would not have seen had he not pointed it out). WHY, in public places, is accessibility-related information STILL pushed back into a freaking corner? The fact that we wouldn’t have found this office had the officer not pointed us directly to it proves how far we as a society still need to come in accepting and normalizing disability.

The security officer informed us he wanted to check the management office to see if there were any wheelchairs there. He looked. There weren’t. He radioed some of his other officer buddies to see if they knew where an available wheelchair was. They didn’t. The officer then proceeded to go look for one, informing my boyfriend and I that we could wait in the management office until he returned. We waited 10 minutes…20 minutes…30 minutes…an hour. By this point, I was pissed. I pulled up another mall map and discovered that the Apple Store wasn’t far from us, so we proceeded to walk. Was it an easy walk? No. Was I already in an insane amount of pain? Yes. But honestly, I was tired of waiting to be accommodated.

This experience got me thinking about a few different things:

  1. Why are there not more wheelchairs available in a huge place like a mall? Heck, there are more scooters available at my local Target and Ingles grocery store than at a shopping mall! Where is the logic in that?
  2. Why aren’t wheelchairs simply placed at every mall entrance? I know this could be somewhat frustrating and might mean investing in a pretty huge amount of wheelchairs, but it would be so much easier for customers. I’ve been to malls before that have provided strollers at each entrance and you just put it a quarter for use and get your quarter back when you’re done using it. Why can’t we have the same thing for wheelchairs? If malls are going to be supportive of families with small children, why not extend the same courtesy to individuals with disabilities?

My experience at Haywood Mall reminded me that I live in a world not build with me in mind. Disabled people are a minority, and while the Americans with Disabilities Act of 1990 was a big step in the right direction, there is still so much to be done. While I am used to living in a world that I’ve constantly had to adapt to, it doesn’t mean it is any less frustrating. I’ve had the mindset all my life that if I want to do something, I’m going to figure out a way to do it that works for me, but that doesn’t mean that I’d shy away from receiving a helping hand every so often. The disability community has been knocked down time and time again over the years. It’s time we speak up…for ourselves, for the rights we deserve, and for future generations of the disability community.

To the woman at Target whose daughter was curious about my Cerebral Palsy

I saw you in the Tupperware aisle and couldn’t stop smiling at your daughter sitting in the shopping cart. Her hair was pulled back into braids, and I smiled as her braids twirled from side to side as she looked around, taking in the wonder of the world around her. You were looking at lunch boxes, likely planning out your meals for the week and hoping your child did not place another Frozen-themed item into your cart. But your daughter kept sneaking glances at me, and I smiled at her, taking note of the curiosity in her eyes.

Your daughter kept looking at me, and I remained patient, waiting for her question. She began to speak, but I didn’t hear what she said.

“What?” I asked her.

“Nothing,” you said, hushing her.

As you hurriedly walked away, your daughter’s eyes drifted back my direction, but I didn’t call after you…even though I wanted to. I didn’t have the chance to tell you that this kind of situation has happened more times than I can count, and that I am not embarrassed or hurt.

Instead, I wish you would have allowed your daughter to ask me about my disability. I wish you would have thought about the importance of teaching your child that differences are okay, and that just because I have a disability doesn’t mean she should be afraid to approach me and talk to me. What most people don’t realize is that I love to talk about my Cerebral Palsy. I love to answer questions to allow children and adults to better understand what my life is like. I love to have the opportunity to explain my perspective on the world.

I am not the first person your daughter will meet who is different. Though you may have felt uncomfortable because your daughter tried to initiate a conversation with me, don’t be. You are her role model. If you feel uncomfortable around me or instinctively want to walk the other direction, so will she. And don’t be worried about saying the wrong thing or that she might. The only wrong thing is not saying anything at all.

Allow your daughter to talk with me and ask me anything under the sun. Allow her to learn that differences are unique and something to be proud of. Give her this moment, even though you may have so many other things on your mind. I’ll be glad to talk with her for as long as she wants. I’ll tell her that this was the way that I was born, but that I would not change it for anything. I’ll tell her that I do things differently, but that’s okay. I’ll tell her normal is just a setting on a washing machine.

Allow her curiosity to bloom and her questions to flow freely, because guess what? She’s learning the most important lesson of all: inclusion.

 

Disabilities within Social Work: The Road Less Traveled

Two weeks ago I wrote a blog post expressing my stress and confusion regarding not knowing what I population I wanted to work with following graduation from my MSW program in May. At the time, I was considering either mental health or disabilities.

After having time to weigh my options, talk with friends and professors, and receive feedback from a stranger, I’ve made my decision. The disabilities field is where I belong. Not only is it my passion; it’s my calling. As someone with a disability myself, I have the ability to offer a unique perspective as a social worker that not many others can provide. Not only do I possess the knowledge as a social worker to look at each individual from a systems perspective, I personally understand the struggles and frustrations of living with a physical disability. I know without a shadow of a doubt that there a very few social workers who can bring in that kind of experience to further empathize with and help their clients on an even deeper level.

You’d think that finally nailing down what population I want to work with would make things much easier. And it has. But there have also been some challenges. For instance, upon talking with the director of my MSW program, I was told something I already knew but didn’t necessarily want to be the case. I was told, “There aren’t social workers in the disabilities field. So, if you want to work in the disabilities field, you’ll have to create a job for yourself.” Even though I already knew that there is a very apparent lack of social workers in the disabilities field, it wasn’t any easier to hear. However, it did help me to put things in perspective and gave me an idea of what to do moving forward. My MSW program director mentioned that finding a job within the disabilities field will be all about networking (as is the case for most jobs, but I think it’ll be even more important in my case). He advised me to literally talk to everyone I know about my passion for working in disabilities and use every possible interaction to discuss my interests and goals.

Following my meeting with my program director, I knew I had to get to work. Therefore, I started by updating my LinkedIn profile to reflect my interest in the disabilities field. Secondly, I decided to make myself some business cards so that anytime I meet someone I want to network with more, I can provide them with my business card. And boy and boy, they sure make me feel professional! 🙂

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For me, another important thing I wanted to be sure and market is my experience with public speaking on the topic of disabilities. Not only am I currently writing my memoir of living with Cerebral Palsy, I also love talking about my disability, especially in schools. When I lived in Asheville and was getting my bachelor’s degree in Psychology, I frequently spoke to groups of elementary and middle school students on the topic of disabilities and bullying. My experiences speaking to those children were some of the most meaningful moments in my life, and I definitely want to once again get involved as a public speaker within the school system to talk about disabilities. As of right now, I don’t have connections within the Charlotte Mecklenburg school system. However, my MSW program director notified me that he plans to reach out to someone he knows within CMS who would likely be very interested in having me come speak at some schools in Charlotte. So, I’m crossing my fingers.

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My first speaking engagement in Asheville, NC at Haw Creek Elementary School. November 2013.

Though it is somewhat frustrating to know that I’ll need to create my own job (in a sense), I am no stranger to going after what I want, even if that may seem impossible. Due to having a disability, I have faced many barriers throughout my life. However, that has never stopped me from chasing my dreams. So, the idea that there are not social workers in the field of disabilities won’t be a deterrant for me. On the contrary, actually. Because there is a lack of social workers in the disabilities field is EXACTLY the reason I need to go into the field. At this point in my life, I’ve become a pro at adapting to seemingly impossible situations, and I’m more than willing to do whatever needs to be done to provide individuals with disabilities and parents of children with disabilities the advocate they deserve!

To Those Who Taught Me To Dream

When I was little, I wanted nothing more than to be a ballerina. Around Christmastime, my grandmother would take me to see The Nutcracker at the Koger Center. As I sat up in the balcony in my checkered dress and patent leather shoes, I stared with admiration at the character of Clara. I imagined myself twirling around in my own leotard with a toy nutcracker in my hands, lost in the music and a dance that was all my own. When I got home from seeing The Nutcracker, I’d put on my leotard and tutu, grab a favorite stuffed animal at the time, and twirl in circles to the music only I could hear.

It was in those moments, in the safety of my childhood bedroom, that I began to dream, imagining doing things I knew I wouldn’t be able to do in reality due to my disability. I imagined dancing with a grace I had seen only in ballerinas. I put on my ballet shoes and twirled until my unstable balance got the best of me and I fell to the floor in frustration. I even remember asking my parents if I could take ballet lessons, determined to learn how to create the beauty I had seen in the character of Clara. The opportunity never arose though, simply because I didn’t have the balance to be a ballerina. Despite walking on my tiptoes, twirling around in circles on those same tiptoes was out of the question.

As I got older and I filled my head with more realistic dreams, I never stopped imagining doing the things I’d never be able to fully experience. I thought of dancing to the music of my world. I imagined running down the street and feeling the wind on my face as I chased the orange and red sunset I saw in the distance. I pictured myself climbing the huge oak tree in my backyard, wanting nothing more than to find a sturdy limb I could sit on so I could rest my back against the tree’s broad trunk and escape into my favorite book. The creative imagination I possessed placed me right into the worlds I dreamed, though I knew I was so far away from actually experiencing them.

I am forever grateful to the people throughout my life who have encouraged my imagination and dreams. Though I was constantly reminded by other kids around me of the things I was unable to do, so many of the adult figures in my life understood the importance of believing in my creativity. Because of those individuals, I have learned what it means to still hope and strive for the things that still seem a bit out of reach. Through my ability to dream, I developed a determination that has propelled me through my life, despite stumbling again and again. While I may not have had the chance to be a ballerina who twirls endlessly with the grace of a perfect melody, I have sung my heart out at a voice recital, capturing an entire room with the simple sound of my voice. I have participated in theatre productions, achieving my moment in the spotlight by being Glinda the Good Witch in The Wizard of Oz. I have written of specific moments of pain during the months following intense operations, creating the same tears in the eyes of my readers that I possessed during my moments of defeat. Though I may not have had the chance to live the experiences I longed for, I have continued to move to the song of my own life, continuously grateful to those who taught me to dream and create my own destiny.

The beauty of my worst fear.

I’m afraid of the day when I’ll no longer be able to walk.

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 22 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

On The Right Road

This past Saturday, I graduated from college with a Bachelors in Psychology. As I sat in the third row among my classmates, barely viewable among a sea of blue, I was happy. I wasn’t the girl a few seats over who kept having to wipe away her tears. I wasn’t the guy one row in front of me who looked bored, as if he’d rather be any other place than seated among his classmates. I was the girl in the third row whose gaze kept moving back and forth between the keynote speaker and section 4 of the arena where my friends and family were sitting. I was the girl who was soaking up every moment.

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Author and higher education expert, Arthur Levine, was the keynote speaker at my graduation ceremony. At first, when he began discussing the current state of our economy and the degree of technological change within our society, I became bored. These were things I had heard countless times, especially within the bubble of a liberal arts university. However, what he said later made me perk up my ears.

“We need your help as part of the most diverse generation in U.S. history – we need your help to knit together a deeply divided nation,” said Levine. “We need your help in dreaming, designing and developing a new world tied together by technology. … We need your abilities and imaginations to create the first global society in history. … Tomorrow’s going to require leaders who want to help heal a pained nation and a troubled world – you can make a difference. … Making a difference is your birthright.” (courtesy of the UNC Asheville website)

Specifically, the last part of this passage touched me, most importantly the idea of helping to heal and make a difference. In many ways, since I have chosen to pursue my master’s degree in social work beginning in August, I felt as if Arthur Levine was speaking only to me. There were moments in which it felt like he was looking right at me. It was as if he was simply reassuring me that I am moving into the right field, while also moving into a profession that I have a true passion for. Receiving this kind of reassurance, which I assume was not his intention, was one of the greatest graduation gifts I could hope to have been given. It was as if the universe was saying, Yep, you’re doing exactly what you need to be doing, so keep going.

Therefore, rather than processing out of my graduation ceremony with a sense of worry and dread, I held my head high. I smiled because for the first time in my life, I truly felt like I was on the right road to start doing what I’m meant to do. What I also realized was that I’ve been doing just that for the past few years. I have been following my passion of helping others ever since I decided to open up about my experiences with Cerebral Palsy in January of 2012, and that passion has only increased since I have started speaking to elementary and middle schools on the topic of bullying as it relates to my CP experiences. So, though I haven’t started my master’s program yet, I do feel like I have been on the right road for a while now. Truthfully, I think I knew that the first time someone contacted me after reading a blog post of mine to tell me how opening up about my experiences has helped them to better understand what their son, their daughter, or they themselves are going through.

As I continue to enjoy my summer, and specifically focus more strongly on writing my memoir, I’ll push myself forward by knowing that I am helping others. Even if it’s just one person, I am helping that person to become more aware of disabilities. I am helping them to see the one thing that I myself still struggle to see sometimes: Different is beautiful.

Sharing My Story: A New Beginning

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Though this is not my first blog, this is the first blog in which I plan to focus solely on discussing my experiences of living with Cerebral Palsy and the process of getting these experiences eventually published. Specifically, my goal is to raise awareness for Cerebral Palsy and other disabilities and allow others to gain a deeper understanding of what it’s like to live with a physical disability.

To kick off this blog and a new chapter of sharing my story of living with CP with others, here is rough draft of the talk I have been giving to elementary and middle schools in Buncombe County since November 2013:

I was born with Cerebral Palsy, a disability that affects my nerves and my muscles, causing me to walk differently than most people. I’ve had multiple intense surgeries and 15 years of physical therapy. My Cerebral Palsy affects the way I walk because my muscles are really tight and because I don’t have very good balance. Because of being physically different, I was always an outcast in school. I had trouble making friends, and it was hard not having someone who knew what I struggled with on a daily basis. When I walk, it is very evident that I am different, and because of my visible differences, I was an easy target for bullying in school.

I had my first bullying experience when I was in kindergarten. At that age, I had to use canes to help me walk. Because of having to use canes, I wasn’t able to walk very quickly, and there was a girl named Ashley who enjoyed picking on me because she knew I wouldn’t be able to run away from her. Every day on the playground during recess, Ashley came up behind me and pulled my hair. It wasn’t a friendly pull either. She grabbed a fistful of my hair and yanked as hard as she could, laughing as I screamed in pain. She pulled so hard that I couldn’t even try to get away from her. Every day, I came home crying, and every morning, I woke up dreading having to go to school and see Ashley on the playground. I felt like crying when I realized I was completely alone and there was no one willing to stick up for me. One day, my teacher, Miss Sandy, came up to me and told me to hit Ashley with one of my canes to help her realize that what she was doing was hurting me. See, Ashley was mentally disabled, so she didn’t know any better, and hitting her was one of the only ways Miss Sandy knew to make her stop. I never did hit Ashley though. I couldn’t do it. Hitting her would make me just like her: someone who wanted to hurt someone else. I don’t think Miss Sandy really wanted me to hit Ashley though. She was just trying to teach me the importance of standing up for myself. In many ways, it felt impossible. How was I supposed to stand up for myself when it felt like I didn’t have a friend who would stand up for me?

I’ve struggled with forming friendships my entire life. As a kid, I wanted friends more than anything. That’s why I never told a teacher that kids were making fun of me. I became afraid that once I told a teacher, the people who picked on me would call me a “tattle-tale” and the other kids would distance themselves even more. Because I was so physically different from the other kids in my class, all I wanted was to feel like I fit in. In my early friendships, many of the people who became friends with me were my friends out of pity. Even though they didn’t specifically tell me so, I could tell it was true. I could tell by the way they looked at me that they felt sorry for me. When I was young, I kept those friendships anyway because all I wanted was a place where I felt like I belonged. However, many of those friendships didn’t last long because most of the people who had been spending time with me left when they got tired of pretending to be my friend.

It wasn’t until I became friends with a boy named Tommy in first grade that things began to change. Tommy was the first person to visibly stick up for me. He confronted the people who picked on me, telling them it wasn’t okay to pick on someone who couldn’t help that she was different. Tommy’s friends laughed at him for sticking up for me, but he didn’t care. He stuck up for me anyway and was there for me no matter what. Tommy also saw the numerous people who became friends with me because they felt sorry for me. He knew how much that hurt me. Even though Tommy wasn’t disabled, he saw how I cried day after day when another person I thought was my friend just got tired of trying. Tommy’s presence in my life didn’t stop other kids from picking on me, but I began to feel a little less alone. Even now, I don’t have many friends. However, the few friends I do have are incredibly close to me, and I am happy to say that one of those friends is still Tommy.

When I was in fifth grade, I took a required PE class. In my PE class, dodge ball was typically the game of choice. Every week in PE, I was chosen last for dodge ball. I even remember one particular day when one of my friends, Allison, was the team caption. This made me excited because I thought: Yes, finally! I won’t be picked last! Allison will choose me since we’re friends. Each team captain began to choose players, and I waited with excitement for Allison to say my name. I looked towards her with a smile on my face, but my smile faded as I realized she was picking everyone else but me. Finally, it came down to Miranda, a girl who had just broken her leg, and me. It was Allison’s turn to pick, and I started to inch towards her. And then you know what happened? She chose Miranda over me! Miranda, the girl no one liked because she was so mean, and the girl who couldn’t even move as well as me because she had broken her leg. I couldn’t believe it!

I was incredibly sad from being picked last for dodge ball, but you know what? That wasn’t even the worst part. The worst part was seeing a girl named Rachel holding a dodge ball in her hands, a small smile on her face when she saw me, already eager to pelt me in the face with the ball. When the dodge ball game started, I hung towards the back. Despite dreading having to play this game every week, I knew a few tricks. I knew staying along the back wall was the best way to not get out immediately, and I knew I’d be one of the last players remaining on my team primarily for this reason. Therefore, the goal was to simply wait for the rest of my teammates to get out. You would assume the waiting part was easy, but it wasn’t. It was just more time I spent wondering how hard I’d get pelted with a dodge ball. Once none of my other teammates remained and I was the only player left, I allowed myself to look over at the other team. By that point, the other team consisted of six players, and they each held a dodge ball. Six against one, and I didn’t even have my own dodge ball for defense. The players on the other team looked back and forth at each other, trying to decide who would have the pleasure of getting me out. Honestly though, I don’t know why they took time trying to decide. They all knew Rachel had to be the one to do it. Eventually, I looked over at Rachel, staring at her just as hard as she was staring at me. Right before she threw the ball, I saw her chuckle quietly to herself. A few moments later, the dodge ball hit me right in the face. The ball hit me so hard that I lost my balance, falling onto the hard surface of my school’s basketball court. Initially, I could hardly breathe, much less get up off the floor. My PE coach came over immediately to help me up and to scold Rachel for what she had done. However, I doubt Rachel ever got the scolding she deserved because I continued to get pelted with Rachel’s dodge balls throughout my entire fifth grade year.

As I got older, I thought the bullying would stop, but it didn’t. The summer after my sophomore year in high school, I attended a creative arts camp. One day I was walking back from a creative writing class, and out of the corner of my eye, I saw a girl named Lauren imitating the way I was walking. I turned to her and said, “Hey, what are you doing?” “Imitating the way you’re walking,” Lauren said. When I asked her why, she explained that she was supposed to observe and imitate people as an assignment for her theatre class. Even though I told her she hurt my feelings, Lauren didn’t listen. As I walked away, I watched as she laughed and continued to imitate me. I ran back to my room and cried, so sad and frustrated that I was still getting picked on. Even at an older age, getting picked on hurt just as much, if not more. Lauren knew what she had been doing. She saw how I cried in front of her, and yet she still continued to imitate me and laugh at me. I couldn’t understand why she would be so mean on purpose. I ended up telling a staff member about what happened, and she contacted the teacher to find out that the imitation was never a class assignment. The next day, though, something good happened. Lauren did the one thing I never thought she would ever do: she said she was sorry.

Being bullied, either physically or emotionally, is hurtful for anyone, but it’s especially hurtful if someone bullies you for something you have no control over, like a physical disability. My bullying experiences have affected me my entire life. I still remember the details of every bullying experience I’ve ever had. I still remember how alone and broken the experiences made me feel, and how it seemed like the bullying would never stop. Typically, kids in school try to be different because they don’t want to blend in with the crowd. For those kids, it’s important to stand out. In my case, I have always been incredibly different, and all I have ever wanted was to be normal and blend in. However, differences have never stopped me from trying to be as independent as possible. I have Cerebral Palsy, but I am a survivor.

**If you are interested in having me come speak at your school, please have the school counselor at your school contact me via email at: accoonrod[at]gmail[dot]com**