What I Want People Who Stare at My Daughter in Her Wheelchair to Know

My daughter Elizabeth’s chronic illness has opened our eyes to things we never would see or know otherwise. It’s led to witnessing a world unknown to most, an increase in compassion, and an awareness that can’t be put into words. Those are all some of the wonderful positive things brought about by an incredibly challenging situation.

One of the more difficult things on this journey has been how people look at Liz — both literally and figuratively — and how she is treated by others at times. There was the boy in her class who told her she was as white as a ghost and looked like a “cancer kid.” While wearing a mask in public at a time she was neutropenic, a senior citizen looked at her in disgust and, backing away, loudly asked, “What’s she got?!” Liz felt especially confused and embarrassed after that interaction.

Those incidents were unfortunate, but not as frustrating as our experiences now that Liz has used a wheelchair in public. Some of the experiences she has gone through, and that we’ve witnessed others dealing with, have been jaw-dropping. Recently, while at Disneyland, as Liz was being stared at and shoved by the crowds, we decided to make a little list to share.

I think that for people like Elizabeth, who appear “normal,” “typical,” or “without need,” assumptions are most hurtful. There’s a stereotype, especially at Disneyland, that some people selfishly choose to use a wheelchair because of convenience rather than due to need. But many people who are assumed to be lazy, or opportunists, or using a wheelchair only because they are overweight, have real reasons to need one. Some people are overweight because they are on steroids that cause weight gain and make mobility difficult. Then there are those like Liz, who have just enough energy to walk during their daily routines, but going to a mall or amusement park leaves them incredibly fatigued, in pain and even with fevers and vomiting due to their body’s reaction. Or people with heart conditions, or lung issues, or nerve problems… Bottom line, it’s not up to us to differentiate the lazy from those who need help. Assuming is unkind and unnecessary.

When my twins were young enough for a stroller, I had a monstrous double stroller that I referred to as the baby limo. Only 14 years ago, strollers weren’t made to accommodate twins, so a large steel piece had to be attached so that the second baby seat hung out over the edge of the stroller by about two feet. It was big, bulky and ridiculous to maneuver through tight spaces and in large crowds. Still, even having dealt with that kind of stroller and the rudeness of strangers, I’ve found that people treat wheelchairs with much less consideration than strollers. It has been eye-opening.

People may act as though they don’t see the chair and walk in front of it, over it, and without regard for the person — the human — who is in it. When you push against the chair, it is the same as pushing a person. While you pretend to ignore the wheelchair waiting to cross the street or enter a door, you are ignoring the person. The chair is an object, but there is a person in it who deserves the same manners and respect that we show those who are ambulatory.

People stare at my daughter in her wheelchair, yet there is no eye contact. Liz says, “Being in a wheelchair makes me feel unnoticed. It makes me feel lower than people, and not because of the chair.” She feels less-than, unequal, and unnoticed. If Liz feels this way during infrequent times of using a wheelchair, which she walks to and from on her able-bodied legs, it makes me wonder how those who use wheelchairs daily feel.

The past months of increased chair-use for Elizabeth have made our family more aware and given us an understanding we didn’t have before. I’ll no longer assume. I’ll easily allow for wheelchairs to pass. I’ll make eye contact with the person in the chair and smile. Join me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.