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I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.
Ever since August of 2013, I have been interning with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I work with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.
Ever since I started teaching art projects to kids in the hospital, I have loved every minute of it. I love seeing the regular kids every week who have finally gotten used to me and will come up and just start talking. I love watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I love seeing the smiles on their faces when they finish their project and run to show their parents. I love finding new ways to teach the children. However, more than anything, I love being able to take in all the different lessons they’ve ended up teaching me without even knowing it.
They have taught me the true meaning of strength. They have taught me what it means to not let an illness define you. They’ve taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they’ve taught me the importance of noticing the small things. One little girl I know is battling cancer, and yet she is one of the happiest little girls I know. She smiles, she laughs, and she plays. Most importantly, she does one thing I believe we often forget. She notices every moment: every smile, every time of laughter, every speck of blue sky. She absorbs every single piece of life, soaking it all in. I try more and more each day to live like her, but I’ve got a long way to go.
Numerous friends have asked me how I am able to be around kids who are dying. And you know what my response is? “How could I not?” These kids need me. They need the chance to be able to fully express themselves. They need a positive person in their lives who can bring something good into their hospital experience. They need someone who cares. A few years ago, I never imagined that person could be me, and yet, here I am.
I have yet to lose one of the children I teach. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I react to losing a child I teach may not be the same way one of the child’s nurses might react. That being said, the important thing to remember is even if I lose I child I teach, there are still tons of other children who need me. Though one day may feel quiet as I mourn the loss of a particular child I cared for, there will be more children coming to clinic the following day, and I need to be the best I can be for them. Being sad around them isn’t my job. If I’m sad, they’ll get sad. That’s why positivity is so important.
Teaching art to children with serious illnesses and disabilities is not easy, but it is the first thing I’ve ever done that’s given me a deep sense of purpose. Seeing the smile on a little boy’s face means I was part of his happiness. Having a little girl cling to my leg begging me not to leave warms my heart more than she will ever know. I just hope one day these children will know how much they have changed my life.
Be kind, for everyone you meet is fighting a hard battle.-Plato
This week, I gave a presentation on disability discrimination in one of my college classes. I had been doing research for the past few months, and I enjoyed bringing this problem to light since it is very personally relevent. Therefore, I knew I had to share it with the blogging community as well
The Americans with Disabilities Act defines an individual with disabilities as someone who has a physical or mental impairment that does not allow them to perform one or more major life activities, and disability discrimination is the act of not viewing individuals with disabilities as fully functioning members of society whose voices deserve to be heard.
Disability discrimination occurs most commonly in the workplace, and it stretches across many different disciplines as well, such as psychology, law, and education. Within the field of psychology, discrimination is harmful for individuals with disabilities because it may lead to feelings of isolation, anger, depression, or anxiety. Within the field of law, disability discrimination is the least discussed type of discrimination law. Furthermore, within the field of education, the presence of disability discrimination perpetuates the feelings of exclusion found in school systems. Disability exclusion also increases fear aimed towards individuals who are different.
The problem of disability discrimination is serious, and it influences individuals with and without disabilities. There is not just one group at fault. Each one of us is responsible for the persistence of this problem, and it is a problem that deserves to be discussed in order for individuals with and without disabilities to feel comfortable in the world in which they live.
But the question is: What can we do?
- At an individual level, we should strive to understand that instead of disabilities being something that causes these kinds of individuals to be seen as less deserving of being heard, the differences should be seen as a contributing factor to create a unique society with more perspectives available.
- At a university level, disability awareness events could be very beneficial. By providing awareness to disabilities, college students and faculty may be able to better understand the struggle of living with a disability, visible or invisible, which they may not have otherwise been exposed.
- We should use person-first language: “individual with disability” rather than “disabled individual.”
Disability discrimination is a serious global and ethical issue within our society today. Since I have a physical disability of Cerebral Palsy, I can attest to the importance of inclusion. My experiences of exclusion made me stronger, but the times I felt included helped shape me into who I am today.
I promised myself I’d write about you eventually. I knew I would need to give myself a certain closure, while also leaving plenty of space for you in my heart, a space you will occupy for the rest of my life.
You carried me through my childhood. You saw the way people treated me, and you acted as a buffer between me and the rest of the world. When we were kids, I needed that buffer. I needed a safe space to go where I didn’t have to be face to face with my situation, while also not having to completely face the blows of reality either. You provided me with that space. Your presence in my life when we were kids was like a bubble I never wanted to leave because it was the one place I felt cared for, the one place I felt safe. Now, I’m no longer inside that bubble, but I find comfort in knowing it’s always a place I can still go if I am in need of reassurance.
Your presence in my life brings me to tears, both tears of joy and tears of sadness. I wonder how I ever got so lucky to have a friend as rare as you in my life. Someone who has known me since we were kids. Someone who knows everything I went through, and loves me just the same, if not more. Someone who has acted as my protector for as long as I can remember. Someone who took me to my first dance, who took me to my prom, and who would drop everything to be there for me. That kind of friendship is so incredibly rare, and the wonderful thing is how safe and cared for I feel, even when I’m just thinking of you. Therefore, my deep love for you makes sense. It brings me to tears because I know my love for you is not the same kind of love you have for me. It breaks my heart, but it doesn’t take away how I have always seen you. Truthfully, my feelings for you make sense. They truly do. I don’t know of anyone who could be cherished the way you cherish me and not develop deeper feelings.
Your belief in all that I am propels me forward. It gives me the strength to keep going when I feel like giving up, and it shows me there are people in this world that would do anything just to see me happy. Though I know that has been true for a long time, it took numerous deep conversations with you until I started to see it with my own eyes. You’ve allowed me to feel a kind of love I thought I’d never find. Sometimes, I wonder what would have happened between us if I would have recognized the love sooner. However, I don’t want to spend my life backpedaling. From this point on, I want to go forward. Forward towards a kind of love I will find one day. A kind of love I now know exists because you have shown me that even though certain forms of love are rare, they do exist.
Yes, I love you. I love you with all that I am, and I truly believe I always will. That’s the thing about first loves, right? They stay with you forever. Though you have not been my first love in the traditional relationship sense of the world, I think 15 years of friendship is a very special, though unique kind of relationship. And it’s been a special kind of love. The kind of love that has allowed me to grow and has given me support all at the same time. The kind of love that has provided me with a true sense of feeling safe, a sense of knowing I matter. The kind of love that is so rare, and yet so beautiful in all that it means.
Yet, because your presence in my life has brought me love, I am hopeful. I am hopeful that one day I will find the kind of love I wish you could show me now. Because in so many ways, you’ve done the best thing for us. Our friendship is too precious to take the risk of a relationship. You told me you vowed to never put yourself in a position where you might leave (since you had seen so many “friends” leave me, and knew how much it hurt me when they did). In its own way, that shows just how much your cherish me, and for that, I am eternally grateful.
I love you, and I always will. Your presence in my life has lifted me up while also breaking me down. Though that may sound sad, it’s good. You’ve helped me to experience an emotion I never thought I’d understand. Granted, though I am no closer to understanding it, I finally know the feeling of loving someone so much that it seems as if your heart might burst from happiness. And now, in this moment, I know what it means to love you, while also allowing other people in. For a while, I was afraid giving myself the opportunity to move on would mean I had to let you go, but that’s not what it means at all. It means loving you, keeping you in my heart, but making space in my heart for new possibilities. It means it’s possible to hold all kinds of love in your heart at once, and knowing there is always room for more.