To just about all the children in my life I am Auntie Cassie. I was Auntie Cassie who worked commercial construction all over the West Coast. I breezed into my little rural hometown for holidays with presents and came home summers and packed them into my truck to go out to the lake. I tied their shoes and handed out their juice boxes.
After the car accident that left me paralyzed from the shoulders down, I dreaded to see the looks on their faces and feared I would cry and make it worse. It was important to me they see my strength and see that I was still Auntie Cassie.
The small and curious children in my life get power wheelchair rides on my lap and have fun “being my hands” and helping me with little things.
Whether I personally know the children, or they’re a child whose attention I’ve attracted in public, I don’t mind questions. Questions from kids warm my heart and I always try to normalize disability for them.
Little ones just want to know why I get a fancy chair with wheels. They are usually satisfied when I tell them I can’t walk. If they need more I may tell them I hurt my legs. If they are old enough I tell them I crushed a bone in my neck and hurt the nerves that help control how we move.
Questions about how the injury was acquired might be answered with “I was in a car accident” but if they’re very small I may look to the parents at that point. They should be the ones to explain the ways people get hurt when they feel it’s the appropriate time for their child.
I might distract them then: “Want to see how my chair works?” is a good one.
Chance encounters can be learning opportunities for kids but in public sometimes I feel like people try not to see me, suddenly get real interested in reading a bottle of laundry detergent. Parents awkwardly try to turn their gawking child’s attention elsewhere. Sometimes they reprimand them for staring.
Children who stare grow up to be adults who look away. The extent of their knowledge on disability is they know not to look at it.
I smile and try to be engaging; show parent and child alike that I’m just a regular person.
If they’re old enough to understand, I do tell kids the truth about getting hurt if they ask.
“I was in a car accident.”
Psychologists say that being really reassuring can actually confirm to a child that there is something to fear, so I just tell them that accidents happen sometimes. I tell them that people can always find a way to enjoy life.
Sometimes I tell them, “So wear your seatbelt!”
To older kids I might say, “So don’t ride with a driver who’s been drinking.
I give them that information so they know they can take preventive measures to avoid my fate.
Sometimes I hope they will remember my words one day at the right time. I will be an example. Why not? It could save a life!
When the children that love me ask me the hard questions I answer as positively as I can without dishonesty.
“Will you ever walk again?”
I usually say “maybe” and start talking about the cool things medical science can do: robotics, stem cells. I’m not religious myself but my Christian friend’s children sometimes suggest miracles and I don’t dissuade them.
I think just about everyone has questions about disability. We stop asking questions at some point and that’s unfortunate. It might even be because our questions were discouraged. Kids need informative answers to their questions if their inquiries are to lead to cognitive development.
A child’s curiosity shouldn’t be silenced. I think we should always leverage curiosity, no matter how awkward the question.
A son of a friend of mine once caught a glimpse of the leg bag for my catheter and he cried out
“Is that pee? Do you have a bag of pee?”
“Why yes, yes I do. Some people can’t go to the bathroom like you do.”
I shrug. I don’t act like it’s a big deal. It isn’t; not anymore.
Disability doesn’t need to be weird. It doesn’t have to be a mystery.
Disability can happen to anyone. That part is scary. That’s even more of a reason to educate our children. Heaven forbid, if one of these kids becomes disabled at some point, (like many, many people do), they might recall that they were exposed to disability early on.
Maybe they’ll remember the lady who was paralyzed from the neck down and cruising a power chair, and how she laughed and challenged them to a race, because well, life goes on.
Just like we tell our kids that bodies come in all shapes and sizes and colors, we should also remind them that we come with varying degrees of ability. Some people’s bodies don’t work the same. Some people lose their ability. It’s OK. It happens. It’s normal. We cope.
It’s just a chair with wheels.