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Afraid to Notice: On Responding to Children with Visible Disabilities

Gennep, Lindsey van, BSN, RN

AJN The American Journal of Nursing: September 2018 - Volume 118 - Issue 9 - p 11
doi: 10.1097/01.NAJ.0000544958.82743.ac
Viewpoint

Pretending not to see these children can be the cruelest response.

Lindsey van Gennep is a pediatric home health care nurse at Bayada Pediatrics and a staff nurse at Lamprey Health Care, Newmarket, NH. Contact author: lindsey.rae@comcast.net. The author has disclosed no potential conflicts of interest, financial or otherwise.

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Figure.

People stare because they notice something that deviates from normal. When we notice someone who is different, our minds become so overwhelmed that we tend to freeze up. Humans are innately drawn toward social comparison, finding comfort in groups that are most like us. The unpredictability of children with contractures who are flailing their arms, grunting, and screaming makes people uncomfortable and unsure of how to react. As a pediatric nurse working with medically fragile children, I have noticed a fault in others that I have only recently been able to work on in myself—the one thing worse than staring at a child with an obvious disability is to conspicuously pretend we don't notice the child at all.

Working with these children for the past six years has been a blessing. I believe it has bettered me as a nurse and as a person; everyone should have a chance to meet these kids. But no one dreams that she or he will one day have a child with serious medical or behavioral challenges. Several years ago, an article by physician Dennis Rosen (“Seeing the Child, Not the Disability,” New York Times Well blog, July 24, 2014) described a mother's sense of comfort in the health care setting because health care workers could see past her child's disability and look at him as they would any other child. When the article described the look of horror she would get from outsiders, I was reminded of my own experiences being out and about with children with visible disabilities. While taking them on field trips or to doctor's appointments, I've noticed looks of sadness and pity. I've noticed the mothers who, assuming the child is mine, looked at me as if I must have abused substances during pregnancy—looks of disgust. At the beginning of my career as a nurse, I thought those looks were the worst.

Until last week. Sitting in an open-door exam room at Tufts Medical Center, I was accompanying one of the little wheelchair-bound princesses to her appointment. She was laughing and smiling. She was born with Angelman syndrome, which severely impairs her mobility and affects her nervous system, sometimes causing brutal seizures. Between her giggles, she rocked continuously and loudly mouthed her hands. Four women with children walked by. They didn't stare at her, or at me. Instead, they quickly looked away, as if they had just seen a stranger naked. They looked away—out of embarrassment that they had looked at all. The passing children followed their mothers’ cues and snapped curious eyes away from my patient.

Prior to my career in health care, I sometimes behaved as these women and their children did—a fault that I hope has been remedied both by my experience with the population and by a more conscious effort to smile at anyone who looks like they need it. Why are we so afraid to admit we notice when someone is different? I wanted to grab the women and their children and tell them it was okay. I wish I could have introduced them to my patient—explained, taught them something new, let them see how she lights up when people approach her. Of course, I couldn't delve into details because of patient privacy.

The next time you encounter a child in a wheelchair or with a ventilator or some other equipment that appears intimidating to you, I challenge you to maintain eye contact and just offer a quick smile to show you noticed them. Once this is mastered, I encourage a playful comment of the sort most people offer to any other child. A lot of children with equipment have orthoses with fun prints or wear sunglasses to prevent overstimulation. Or maybe they have a toy strapped to their wheelchair tray that could be used to strike up a casual conversation with them or with their mom. These children want to be interacted with, they want to be noticed, and we don't need to pretend that nothing is different about them. They've overcome battles alongside their families and caregivers that we should be not only aware of, but impressed by.

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