I wrote a poem, which appears at the conclusion of this article, after a trip to a football game with my son in a wheelchair, when I realized it appeared as if everyone was looking at us. I began to listen to the sound of Noah’s wheelchair on the sidewalk. It made this “ba bump” sound over the uneven terrain.
The poem expresses the uncomfortable attention those in wheelchairs often receive…especially when the person in a wheelchair is a child. That attention is like being a celebrity with few—if any—of the perks. (Nope, no big house on the hill.)
I know if you have a child in a wheelchair, you may have experienced moments like this in life, where all attention is focused on you or your family. It is never comfortable being the center of unwanted attention. I am aware that a young child who is immobile and in a wheelchair isn’t the norm. Thus, I do understand the draw towards anything that is considered not the norm or different. However, being the focus of attention isn’t fun. It can be uncomfortable for some children and for some families, like ours.
I began to consider how I approach moments like this when all eyes are on us, and I realized that it really doesn’t slow us down. So, I wrote this poem to sum up our feelings on the rhythm of our lives. We have developed the art of creating our own music regardless of what is going on around us. It is almost Zen like. I thought I would share our insights on dealing with those inevitable encounters with strangers while out and about with a young child in a wheelchair.
First, I try to remember that at one time, those who are different from my family might have drawn my attention, too. So, I always try to remember my feelings before my son was born. I might have been one of those strangers who would have looked in the direction of my child. Thus, although uncomfortable, I try to remember that those who look in our direction may have warm hearts despite their cold stares. They may even want to speak with you, but may not know what is appropriate to say or know how to approach you.
I know others may feel differently, but I would rather someone say something inappropriate than to say nothing at all and blankly stare in our direction. However, that is just me. So I try to be the icebreaker. I break the ice with a warm smile and eye contact. I have met so many incredible people by just being willing to be that person to put myself out there and speak up first.
No matter what the other person says, I always redirect to a positive of my son. I try to remember that this individual may have NEVER had direct contact with another child with verbal challenges in a wheelchair, someone who happens to have cerebral palsy. My reaction may be a determinant in how they view all children with a similar diagnosis in the future.
That does not mean I condone rude words, behaviors, or actions. However, my goal when approaching others is to make it a positive experience. Thus, even if the first words out of this individual’s mouth are, “What is wrong with him?” I redirect. So, I might say, “Nothing, other than his crazy taste in music. This old mom finds some of today’s music a little scary.” This is all said with humor and a smile.
The majority of the time, the person and I will laugh for a second and we will commiserate about Noah’s taste in music, and at some point, I will bring up the topic of interest, the wheelchair. I might say, “Oh, you were curious about why Noah rolls instead of walks?”
By doing this, I have first redirected the person back to something Noah loves to talk about, music. My hope is for others to see him as the cute little guy he is with diverse interests like all children. We have moved from focusing on our differences to focusing on our common interests. Plus, now everyone leaves with a smile, becoming a little more aware of what life is like in a wheelchair. Not all meetings with strangers will end with such positivity, but that is my focus. That is my goal.
One thing that I am very careful about is to not let pity creep its elusive head into our conversation. The story of Noah’s traumatic birth and challenges are sad stories, but Noah’s life is wonderful. Noah has never wanted for food or shelter. He has wonderful friends and a family who adores him. Furthermore, there is nothing sad about how Noah approaches his life. He knows no other life other than life with mobility challenges.
Noah doesn’t look at life in a wheelchair as worthy of pity. Why should I? Why should you? So, if someone turns the conversation to pitiful statements, I stop that pity train in its tracks and redirect to how blessed our family is. You will discover that pity and reiterating one’s blessing do not coexist well together. Inevitably, the person will have to change the direction of the conversation to something different.
I know others may feel differently, but it is my belief that not everyone deserves to hear our story. If the person is openly rude, if the time is not right (maybe you are in Walmart after a particularly trying day in your sweat pants), if you are pressed for time, or if the person doesn’t seem to posses that empathetic quality needed to establish a cordial conversation, maybe this is not the perfect moment to tell it. Not every meeting needs to be an opportunity for awareness.
Lastly, whomever you encounter along the way in life, don’t let any one person or conversation steal your happiness or your inner music. Don’t give a rude individual that much power over your feelings. You are blessed with someone amazing in your life, a child who just happens to have a different mode of transportation…wheels.
Yes, your family is blessed. It is my belief that one’s blessings were destined to be shared. Furthermore, those with disabilities deserve to be an active part of their community circle. No, no one is ever meant to live life in isolation. The only way we can expect others to become understanding of those with physical differences is for more and more individuals to interact with someone in their community who happens to have a physical disability.
Over time, my hope is that we will see the individual as more than his mode of transportation.