Originally published by Hemophilia News Today, March 6, 2024
There’s a stigma surrounding those who use wheelchairs. To most, they evoke pity: “Oh, how awful to be confined to a wheelchair.” Perhaps it’d be awful for the person making the statement, but is it awful for the person using the chair?
When an older adult is in a wheelchair, it’s not out of the ordinary. But when a young person uses one and appears fine, gawking proceeds. The stares make the young wheelchair user feel less than, and even embarrassed.
My son, Caeleb, is 18 and a senior in high school. Complications from his hemophilia with an inhibitor caused him to lose mobility in second grade. People get uneasy seeing a healthy-seeming 7-year-old using a wheelchair.
In third grade, Caeleb no longer needed a wheelchair, but he often used a walker. Amazingly, he still got where he wanted to go, always. Being unable to walk didn’t hinder my son. He was always determined. As the years progressed, his need for mobility aids became less frequent.
But now, the painful part of Caeleb’s mobility journey has resurfaced. In fact, his pain has increased, with his ankle and knee joints severely damaged. Caeleb has to care for his joints with regular physical therapy, water therapy, and injections, and ankle surgery provided minimal relief. This year, his senior year, he’s missed numerous school days — and when he does attend, the only way he can get through the day is by using a wheelchair.
I never thought his pain would be so debilitating that he’d need a wheelchair again.
After church on a recent Sunday, Caeleb and I discussed a trip he’ll be taking to Washington, D.C. He accepted that he must use a wheelchair, but there was pain in his eyes. It’s not physical pain; it’s the emotional pain of needing to use a mobility aid and remembering how he’s treated when he does.
While some kids at school don’t understand Caeleb’s need for a wheelchair, it’s more harrowing when he’s out in the world and adults mock him. When my son talks about strangers staring at him and even telling him he’s faking his need for a chair, it hurts.
People don’t understand that many of those with chronic illnesses have good days and bad. There are days when some people, including my son, cannot walk and need a wheelchair, yet they also have days when a chair isn’t needed. These ambulatory wheelchair users are simply trying to live their lives without disruption.
Do people stop and think that maybe wheelchairs are a symbol of freedom?
I told Caeleb that we’d spend time getting him a custom wheelchair that would last for a long time. We talked about getting a lightweight version so that he could get in and out of the car on his own when going to college. He perked up during this conversation. In these moments, Caeleb had a realization.
This realization for Caeleb is one of freedom.
I choose to see my son’s wheelchair as a vehicle for independence, empowerment, and freedom — and not one of limitation or confinement.
