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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