Why Do Children With Visible Disabilities Make Us Uncomfortable?

What do you do when you see a child who has obvious visible disabilities? Do you say hello? Do you turn away?

In this month’s Viewpoint, “Afraid to Notice: On Responding to Children with Visible Disabilities,” pediatric nurse Lindsey van Gennep talks about her experiences working with medically fragile children in the community. She has learned a lot about kids with various abilities and their capacity to simply be “kids,” and also a lot about how people react to children who are different.

“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, look at me as if I must have abused substances during pregnancy—looks of disgust.”

Pretending not to see.

But van Gennep found that the reactions of people who didn’t even acknowledge the child she was with could be even more upsetting.

“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.”

2018-09-12T11:28:10-04:00September 12th, 2018|Nursing|0 Comments

Incomplete Combustion: Crohn’s, Motherhood, a New Normal

April Gibson is an essayist, poet, and ostomate. She holds an MFA in creative writing from Chicago State University. In her writing she seeks to address and renegotiate societal beliefs about motherhood, illness as alienation, beauty as a shell. Her work is published or forthcoming in Tidal Basin Review, Reverie, The New Sound, Aunt Chloe, AsUs and elsewhere. She lives in Chicago with her two sons. 

AprilGibsonTwenty-one days pass. I am a 90-pound bag of skin. Legs like peanut butter drapes thrown over femur bones, no muscle, no pronounced curve. A lover would look past me quickly in the street. I do not want these scars, or this strange body. I want to wear a red bikini. I want a kiss on my belly.

Three weeks felt like spans of small forevers. I didn’t believe my legs and arms were mine. My abdomen sunk to a cave, save for the rustling bag. My aunt hurled the word “unconscionable” on each visit, until the hospital knew her voice. My mother, grandmother, aunts, they stayed in mornings, my little brother stayed through late nights, nodding off once the drugs snatched my eyes to sleep. So many people, one could’ve mistaken my bed for a box. I can’t remember them all, or even all the days.

The nurses were there everyday, same ones. This is their wing. The doctors […]

2016-11-21T13:07:18-05:00June 14th, 2013|Nursing, patient experience, Patients|10 Comments
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