I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I share my journey with Friedreich’s ataxia (FA) openly, and I know that my sharing, coupled with my highly visible walker, puts a spotlight on my disability. However, I’ve had some acquaintances who immediately approach me and bring up my disability every time our paths cross — regardless of whether I’m happily making small talk with someone else or interacting with my children.
I appreciate how much love, support, and empathy my openness generates for me and the FA community, but having a visible disability isn’t an open invitation for relative strangers to constantly start deep discussions about my health. While I believe these people mean well, our interactions tend to put a dark cloud over my day.
I’m painfully aware that I have a disability, as are the people I interact with, but that doesn’t mean it’s the only thing I’m capable of discussing. Even though it’s often at the front of my mind and my walker is generally the first thing people see when I’m out and about, FA isn’t all there is to me.
These interactions inspired me to share several points that can hopefully help able-bodied people be more conscious, courteous, and correct when interacting with those who have different abilities.
Tips for talking with people with disabilities
First, we don’t always have to talk about my disability, nor do I want to. FA and its effects are only a portion of who I am, so it’s OK not to always talk about it.
While discussing this point with my husband, he said, “What if, for example, someone had a sibling pass away? Would you bring that up and tell them how sorry you are or how unfair it is every single time you talked? Or if someone was having a bad hair day, would you corner them and tell them how brave they are for going about their day?”
I know that these examples aren’t equal to living with a degenerative disability, but I think they’re still fair points. Just like the devastating heartbreak of losing a loved one would make you unspeakably sad, FA makes me sad. Discussing it is healthy and necessary to process your feelings, but there’s an appropriate time and place to do so. And when people call me brave with eyes full of pity, it just makes me feel so small and self-conscious.
Second, if we chat and you don’t acknowledge my walker or disability, that’s fine! I promise I’m not thinking, “How insensitive that they didn’t acknowledge my FA!” I’m only thinking about the normal and lovely conversation we had. Just because my struggle is visible doesn’t mean that it needs constant acknowledgment.
Next, I appreciate subtle offers to help me carry stuff or navigate tricky terrain, but for the most part, I will ask for help if I need it. I know my limits and capabilities well, and I’m not shy. There is a difference between condescendingly questioning my judgment about my abilities and being a friendly neighbor. Please just take cues from me and let me decide what I can and can’t do.
Lastly, and most importantly, I’m more than my disability. There are many more interesting things in my life and topics I enjoy so much more than FA. Yes, FA is a big part of who I am physically, and that has refined my personality, but I don’t want it to define me. I would rather talk about my family, a new restaurant, the latest “House of the Dragon” episode, weekend plans, or what is going on in your world
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Philippians 4:8 says, “Finally, brothers and sisters, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence and if anything worthy of praise, think about these things.”
I think that’s great advice, and I plan to not only think, but also talk about such things.
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