Responding to unsolicited pity as someone with a disability
What I wish people would consider before questioning my abilities
I recently had an unpleasant encounter with a stranger who was overflowing with pity regarding my disability. In the end, she questioned my abilities with what seemed to be judgment disguised as compassion.
I had my 6-year-old daughter with me, so I was extremely intentional with my tone, body language, and word choices. To my daughter, the conversation probably looked and sounded polite. But it’s been over a week now, and I haven’t been able to forget the encounter.
Even though I don’t believe that everyone, whether they’re a stranger or an acquaintance, deserves limitless knowledge about my disabilities related to Friedreich’s ataxia (FA), curiosity and opinions are unavoidable.
As my symptoms have progressed over my decade of living with FA, for instance, my disabilities have become more obvious. Understandably, people have thoughts, reactions, questions, or comments when they see a disabled 36-year-old mother with two young children. I don’t begrudge people for that; it’s justifiable and normal. People, I believe, have a right to be curious.
However, I resent the obligation to respond to ignorance, pity, or unkindness when I’m simply doing my best to go about my life.
When to confront someone with a visible disability
I was in a fine mood. I wasn’t visibly struggling any more or less than I normally do. I wasn’t thinking about FA in that moment. I was just enjoying talking to my daughter on our way back to the car from the dance studio where she’d just finished class. That’s when this woman confronted me.
The more I digest the interaction and study my feelings about it, my thoughts seem to stick on these two points: First, I’m under no obligation to reveal information about my health to strangers, and second, visible disabilities don’t automatically equal an all-access pass, no matter how kind you think you’re being.
Someone like me, who’s clearly been battling symptoms for a while, is most likely in tune with their needs. I know my limits and the precautions I need to take. I also know when and how to ask for help.
So what’s my advice on seeing someone with a visible disability? I guess it boils down to the advice that most of us are taught in preschool:
If you don’t have anything nice to say, don’t say anything at all.
Will your thoughts and questions help the other person? If the answer isn’t a definitive yes, the comment is better left unsaid. A polite smile or simple greeting can have a wonderful, positive impact, so try that instead.
Put yourself in the other person’s shoes.
If you were dependent on a mobility aid yet happily walking and talking with your daughter, would you want to pause to discuss medical issues with a stranger and be thrust into a position where you have to embrace sentiments with humility? If the answer isn’t yes, once again, it’s better left unsaid.
There are some amazing people in the world, and my positive interactions outweigh the negative ones 1,000 to 1. Hopefully this tried-and-true advice can make the negative interactions even less common.
“A new command I give you: Love one another. As I have loved you, so you must love one another.” — John 13:34 (NIV)
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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