How I field the question, ‘Why are you in a wheelchair?’
I have three responses to help people understand why I need a mobility aid
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Since making the transition last year to primarily using a wheelchair, I am often asked why.
Over the years, I’ve developed three types of “elevator pitches” to answer questions about my health and dependence on mobility aids. My answers vary depending in part on how much time I have, who’s around me, how well I know or don’t know the person asking, and my mood in general.
My super high-level, nonspecific answer usually goes something like, “I have a genetic condition that affects my balance and coordination, so I use this wheelchair to get around safely.”
My second-level response, and the one I say most often, is a well-rehearsed speech: “I have a genetic condition called Friedreich’s ataxia, or FA, for short, and this deteriorates my balance and coordination over time. I used a walker for a couple of years, but now my body needs a little more help, so I use this wheelchair to get around safely.”
My third response includes my second response and adds the science behind how my cells replicate and how the problematic GAA repeat acts as a roadblock to my central nervous system’s ability to communicate with my body to carry out everyday functions. I explain how this cumulative effect makes my abilities deteriorate over time.
Raising awareness and feeling more confident
More than a decade into life with FA, 11 years into parenthood, and eight years into relying on mobility aids, I’ve been asked this question by people of all ages.
For younger kids, I usually say, “Can you stand on one leg? Show me!” When they are standing on one leg and using their arms to retain their balance, I’ll say, “Wow, that’s amazing! Have you ever heard the word ‘balance’? Balance is the amazing and natural ability of your body to not fall over. You have great balance! Well, my balance is pretty bad. I have a hard time walking, fell over a bunch, and even broke a few bones. So, I use this wheelchair so I can get around safely without falling over and getting hurt.”
For older kids, I ask them if they have ever been on a moving boat. If they say yes, I ask them if they tried to walk while the boat was moving. They usually say something like, “Yes! But I kept almost falling over because the boat was moving so much that I couldn’t balance.” I explain that the ability to stay safely upright is their body and muscles working together in a way that my body can no longer do. Then, I explain that I use this wheelchair to safely get around without having to worry about falling over and getting hurt.
I hope that by sharing this, you might be able to borrow some of my response, not only to inform people, but to feel confident and know you are not alone.
It can be quite fun to see the moment when people understand your use of mobility aids a little better, especially children. This all helps to raise awareness, but it also helps establish compassion and understanding for those around us whose lives might look a little different than everyone else’s.
“The heart of the discerning acquires knowledge, for the ears of the wise seek it out.” — Proverbs 18:15
Note: Friedreich’s Ataxia News 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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