Today I followed a link to an article entitled, "50 things you should not say to autism parents." As I read the list, the thought that kept going through my mind was, how could someone think something like that, let alone say it? I don't know a lot about autism, but I do know enough to not say something like, "He just needs to apply himself more."
But, of course, it's easy to scoff at these types of comments when they're about something I think should be common sense. It's easy to forget that what may seem obviously rude or insensitive to me may be innocently-intended, merely a comment made in ignorance.
And now that I've given you a paragraph of abstract generalizations, here's my concrete example.
During Fall semester of 2010, I met an amazing girl named Cindy. We were in a class together, and though we'd only interacted a couple of times, we found out we had the same favorite author (those of you who aren't readers may not understand the instant bond that can create), and we became Facebook friends.
One day Cindy missed class, and I saw that she had posted something about not feeling well. I posted that I hoped she got better soon, and when I saw her in class a couple days later, we had a conversation something like this (it was a year and a half ago, so obviously it's not verbatim):
Me: "I'm glad you're here. I saw on Facebook that you weren't feeling well, and I saw you coughing today, but I'm glad you were well enough to come."
Cindy: "Oh, yeah, I had a rough day the other day. I have Cystic Fibrosis, so I always have a cough even when I'm not sick, but I do get sick a lot."
Me: "Oh man. Kind of like pregnancy, I guess, where you just never really feel well and it just kind of wears you down."
Yup. There it is folks. This is where you should be thinking things like, How could she even try to compare a life-long and ultimately fatal genetic illness with a temporary condition that brings so much joy at its conclusion? Or, That's so insensitive of her to say something like that when pregnancy is something so many women with Cystic Fibrosis can only dream about.
Well, I know that NOW.
This is something that I've felt bad about for the last year and a half, but I'm sure that, just like parents of children with autism, my friend Cindy gets insensitive comments like that all the time.
Getting to know Cindy provided an incentive for me to educate myself about Cystic Fibrosis. (If, like me in 2010, you have no idea what it is other than that it's "something medical," I recommend you read Cindy's own explanation of it here.) While I still don't know or understand all the many ways it affects the lives of those who have it and their immediate families, I at least have a basic understanding of what it is, and I'm slightly less likely to make ignorantly hurtful comments in the future.
I learned something valuable about myself from that conversation above, though. I learned that I'm in the biggest danger of making these types of comments when I'm faced with something I don't know anything about and I grasp at straws for a way I can relate it to my own experience. It's something most of us do automatically, because our own experience is the frame on which we stretch our view of the world.
But what if, instead of trying to relate it back to myself, I had focused on Cindy? What if I'd said, "What is Cystic Fibrosis?" and then really listened?
Nearly a year after my conversation with Cindy, I was staying with my mother when a friend came to celebrate her daughter's birthday with us. Her daughter had died years before, at the age of 10. She'd had Cystic Fibrosis.
Again I automatically tried to find a way to relate, mentioning that I had a friend from college who had Cystic Fibrosis. This time, however, I caught myself at that point and started to listen. And thanks to what I had learned from Cindy, I was able to better understand and be a sympathetic ear as this friend talked about her daughter's struggles.
I'm not always good at stepping outside myself. I'm not always eager to admit my ignorance. But I'm trying to learn from it, and I request the patience and forgiveness of each of you around me as you struggle every day with things I don't understand.