Last week, Scarlett and I were out for lunch with some other family members, when she caught sight of a man who had prosthetic arms. Using the hooks on the ends, he deftly pulled a credit card out of his wallet and paid for his food. Scarlett stared. “Why does he have those?” she asked quietly.
I’ve faced a lot of curious looks since I got my walker, and now my wheelchair. Children will ask. Adults mostly do not. My least favorite times have been when I can hear a child ask their parent about me, and the parent shushes them or calls them nosy.
So my response to Scarlett was, “Ask him.” She did, and he told us that he was born without arms and uses his prosthetics to do everything he needs to do. Then he and I got into a discussion about asking. We both said we liked when kids asked. They’re curious, and we’re different. It’s ok.
I can’t speak for others, but I also don’t mind when I’m interacting with adults, and they ask. I’m in the awareness raising business, so maybe that’s why, but I’d much rather someone ask the question than let it sit awkwardly in the air. That doesn’t mean I want to get into details about anything beyond the surface. We don’t have to talk about my emotions, my hopes and dreams, my lost opportunities. Those are not topics I want to discuss with strangers. But when the guy selling me and Rob a new couch last year said, “What’s the deal with the walker?” I actually felt a little relieved.
It can be a sensitive issue. Adults can’t just walk up to other adults on the street and question their differences. That would be weird. But if we’re talking, and you want to know why I’m in a wheelchair, I’ll tell you. I’m past the point of pretending it’s not part of who I am.
A few weeks ago, Scarlett and I were at the park and we saw a very young girl with a walker, her head shaved. “She has a walker!” Scarlett said with excitement, because for her, it’s not a bad thing, just a thing that some people need. She wanted to know more. I wasn’t sure if it would be ok to ask this little girl about her walker. I didn’t want to make her uncomfortable, I didn’t know the rules. But we asked. The girl’s older sister said, “She uses it because she had cancer in her brain.” That sparked another round of questions from Scarlett once we walked away, none of them particularly easy to answer.
I still don’t know if asking was the right thing in that situation. I certainly would not have done it if Scarlett had not been with me. But when we’re together, I’ve decided to err on the side of noticing, of acknowledging differences, so that she meets all kinds of people and hears their stories. So she never thinks that a physical difference makes someone entirely unapproachable.
My wheelchair is a source of major curiosity on the preschool playground. “Why do you need that?” “Are you sick?” “When will you be able to walk again?” “Can I have a ride?” Once, a girl heard another kid asking, and pulled her away, saying “You can’t ask that!” I presume she heard that from an adult.
I understand the inclination to respect privacy, and there may be many people, disabled or not, who disagree with me on this. But I would rather my disability be a brief part of the conversation than something that stands in the way of a real connection.
Back to All Posts
“Err on the side of noticing.” I love that. I usually ask because I’m interested, followed quickly by, “You don’t have to tell me anything if you don’t want to!” I’d say I get a positive response 99% of the time, although I can’t remember a negative one.. Sometimes I get more info than I bargained for, as if the person is so relieved that anyone cared or had the courage to ask. And that’s even better because it leads to an actual connection.
In a different setting in my former corporate life, I once told our group president that I didn’t understand something he was talking about. I debated the merits of admitting I didn’t get it, but I figured I needed to know if he wanted us to execute on it. So I asked, and the room went silent. He proceeded to apologize for not being more clear and explained it much more thoroughly. It turned out that nobody in the room had understood. So i figure it’s worth asking.
Thanks for the great insights, Sarah!
Beautiful, Coggie.
Karen, yes! Great example and totally worth asking.
Beautiful read
your posts continue to inspire….
Sarah,
I find it hard to tell you just how much I love your writing. Your ability with words is wonderful. Your entry today is one I not only support, but enthusiastically agree with. To be honest, I wish more people would ask. It eliminates the awkwardness, after they feel bad for a moment or two and I tell them not to, and it allow me to tell them about ALS.
Keep writing. Write lots. Scarlett will treasure these words in the future.
Richard, thank you. What a beautiful thing to say (many beautiful things, actually.)
I am not only learning about ALS but also learning how a very loving, generous person uses the
gifts she has been given…..keep writing, Sarah….we are all benefiting from your words & experiences…..
It’s less scary when kids ask…and it so good for then not to be afraid of any disability. My Tori told me once she wanted ALS so she could ride in a chair like me. Talk about not holding back tears. She proudly introduces me to people as this is my mom Trickett, she uses a wheelchair cause she has ALS.
I smile at everyone staring just so they feel like they can ask if curious and show that this doesn’t define me.
I desperately hate big fat elephants. Elephants are awkward, and far more so than earnest questions that yield understanding from conversation. And when we talk with one another (what a concept, eh?), we start a connection with another human being, become more empathic, more giving and less afraid.
My mother contracted Polio as a toddler, so I never had a “normal” mother. She had a very pronounced limp and no use of her left arm/hand. So I’ve been touched by the effects of parents’ discomfort with their children’s innocent questions. When my daughter recently asked me why a little boy was using a walker, I told her it probably helps him to walk better. I didn’t whisper. It’s nothing to feel ashamed about. And when we “grown ups” hush our kids from respectful inquiry, we’re showing them we’re uncomfortable with someone who’s different.
We needn’t be and neither should our kids.
“And when we ‘grown ups’ hush our kids from respectful inquiry, we’re showing them we’re uncomfortable with someone who’s different.” Excellent point. Thank you Maria.