Seeing Beyond

Seeing Beyond by Lea Bogatie - Photo by Elena Eisenstadt

I have stopped at the edge of a busy street, waiting to cross, when I catch a glimpse of a woman pushing a girl in a wheelchair.

The girl appears to be around 10 or 11. She has short brown hair and brown eyes the color of chocolate. She beams, even though it is an overcast day. Her head is leaning to one side as she sits there, silently.

It is a busy intersection. There are people impatiently waiting for the light to turn green and people rushing to work. However, as the woman and the girl walk along, some begin to stare. Some glance and then quickly look away.

When I see the two of them crossing, my heart catches in my throat. The girl is beautiful, and she takes my breath away. She also reminds me of someone whom I loved dearly. Tears begin to fill my eyes as I drift off into distant memories…

~ ~ ~

Today is a random day in February. The year is 2014. My older sister loves to draw, so I have taken out the crayons from the cabinet. There are over 30 colors in the box, ranging from crimson red to deep blue.

I prop the blank printer paper and the crayon box on the large tray connected to my sister’s wheelchair. I ask her, “Devora, what color crayon would you like to start with?”

Devora moves her stiff arm toward the entire box, knocking it off the tray completely.

I pick up the box, and I try again.

This time, I only put 10 crayons on her tray. Then I repeat my question.

Devora concentrates on the colors in front of her for a few seconds. She then moves her arm toward a group of crayons in the corner. She is unable to point to the specific color she wants, since her hands constantly remain in fists.

Third time’s the charm, I tell myself, as I try a different method. I am beginning to get frustrated, but I don’t let it show. I pick up each crayon individually, stopping to ask her about each.

“Do you like the blue one?” I ask her. She remains quiet and does not smile, which I interpret as a no.

I move on. “How about the pink?” A fraction more excitement begins to show on her face, but I know we are not there yet.

I pick up a third. “What about the purple one?” This time, she cannot contain her excitement. She grins from ear to ear and vocalizes enthusiastically, signaling a yes.

I mentally slap myself. I should have known purple was the one; it’s her favorite color.

Devora suffered from cerebral palsy, a disorder that affects a person’s movement, motor skills, and muscle tone. She was unable to walk or talk, which left her struggling to complete normal daily tasks on her own.

Although I adored my sister, it was difficult living with her. She constantly required assistance with eating and bathing, among other tasks many of us take for granted. She would often wake up in the night, crying for hours on end.

My sister was stripped of her freedom, dignity, and independence due to the disorder she acquired during birth. None of it was her fault, yet she was defined by these limitations her entire life. In my experience, most people who met her did not look beyond her cerebral palsy to get to know her better. Perhaps they assumed she did not understand them, so they decided not to try. I would imagine that they did not ascribe much value to her anyway. Moreover, understanding what Devora was trying to communicate required significant effort, and her capacity to give back to people was limited in return.

I struggled with this, too. As much as I tried to pretend Devora was like any other older sister, I sometimes could not. I was unable to ask her for advice or discuss how her school day went. I could not relate to or empathize with her. I had to learn how to communicate with her in my own way, since she was unable to form proper words. Her disability prevented me from really getting to know her on a deeper level.

Despite this, we were still close. We would draw and listen to music together. We would play games and go on walks in the park. I tried hard to be her best friend, because by a young age I already understood that she might have a hard time being treated equally in society. I always found this unfair, because although she struggled to communicate, she could still understand what was happening around her.

Nevertheless, being Devora’s sister required a lot of patience. It took a lot of effort and at times it was discouraging. I remember being especially hard on myself for situations that involved her. Even something as simple as forgetting her favorite color for a second could make me feel awful for an entire week. I tried so hard to treat her normally, since I was afraid that other people might have looked down on her because of her disabilities.

Devora died on July 23, 2014. It is unclear why she died so suddenly. I struggled to accept her death for a long time, and to be completely honest, I am still struggling with it today.

Although Devora had a debilitating disability, she was decidedly much more than just that. She was kind and creative, and she had a wonderful sense of humor. She was always smiling and cheerful, even when she was sick or in surgery.

My point is this: sometimes, what you see on the surface is not the entire picture. Sometimes, it is necessary to dig deeper. This is especially true regarding human interactions and relationships. What I learned from Devora’s brief, but meaningful life is that it is important to be able to put yourself in someone else’s shoes. If someone can only see based on his or her own experiences, they will be stuck in a mindset that will never progress.

The world is filled with many people, and everyone has their own personal challenges. As human beings, we need to begin to fully accept every aspect within every person around us, in order to make the world a more compassionate place.

~ ~ ~

I am transported back to reality. I notice the woman and the girl looking at me, and I realize I have been staring. However, I have learned not to turn away from the uncomfortable.

So instead, I stare the girl straight in the eyes.

And I smile.

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