A reminder that some mobility-aid users have invisible disabilities
It pains me to watch my son confront judgment and discrimination
When my youngest son, Caeleb, was 8 years old, our family went on a trip that required him to use a wheelchair at the airport. His severe hemophilia A with an inhibitor had caused persistent joint bleeds, which resulted in significant pain and limited mobility, as well as permanent damage to his right knee and ankle. Since then, he’s needed to use a mobility aid at times.
At the airport, the wheelchair couldn’t go through regular security screening, so I told the agent that Caeleb could walk through. But before I could say another word, the agent got angry and accused us of using a wheelchair to get better seats on the plane. He never looked at us, but screamed his displeasure to those in the vicinity.
I was livid. As I prepared to confront this man, my husband grabbed me by the arm and pulled me away. “We’ll never get on that plane, Cazandra.” He was right, and I walked away with tears streaming down my hot and angry face. I’m grateful Caeleb didn’t understand what was happening.
More understanding, less judgment
Caeleb, now 18, is considered an ambulatory wheelchair user. He can sometimes walk without support, but often needs a wheelchair to help him get around, as chronic pain is always present. He uses one at school to navigate the long distances between classes, as well as at the grocery store, mall, and airport. As our family now prepares for a trip to Washington, D.C., I had an idea that I thought Caeleb would appreciate.
Instead of a wheelchair, why not use a scooter?
When I approached Caeleb with this idea and showed him some examples online, he immediately frowned. I told him a smaller, lighter piece of equipment might be more manageable. It would allow him to get from one place to another freely and of his own accord without needing someone to push his chair.
“I don’t want to use one because old people use them,” Caeleb said.
“But you use a wheelchair,” I replied, surprised by his reaction.
Over the years that Caeleb has used a mobility aid, his classmates aren’t the ones who make accusations regarding his use of a wheelchair. The adults tend to be the worst, in fact, offering unwarranted comments and lengthy stares of disdain.
He endures such stares and judgment when using a cane, wheelchair, or walker. He only uses these aids when necessary, and those close to him understand. Sometimes, though, encouraging my son to use an aid is difficult because he doesn’t want to be seen as different.
Prejudice and discrimination toward people with disabilities are a reality. It can be especially challenging for people with invisible disabilities to move in the world when others accuse them of faking their illness.
Author Heidi Cullinan writes, “When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”
Next time we see someone who looks healthy but uses a mobility aid, I hope Caeleb comes to mind. Instead of judging by what we see, let us remember that we don’t know the person’s story.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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