Even as a sib, I don’t always handle disability wellPosted: October 27, 2010
I recently saw pictures of a friend’s newborn (in a shared space online) and immediately recognized the baby’s cleft lip. The kid is absolutely adorable, with striking blue eyes, and the pictures had really funny captions. And you know what? I felt myself to be on the verge of crying. (Admittedly, this was partly due to my not-so-coped-with desire for having kids, and my emotions running high after some unfortunate events at work that day.)
Why did I feel so much emotion? My sister was born with cleft lip (and cleft palate). I have no idea whether it’s appropriate for me to say something to the new parents, but it was one of the first things that came to mind: “Hey, this was part of my sister’s life! I bet you and my folks have some similar experiences. And maybe some of what I know about Lily’s experiences could be helpful to you.” Next thoughts: poor kid, that he’ll probably have to have surgery at such a young age. Lucky kid, that he’ll be too young to remember it. Sadness for the fact that a child entered the world imperfect, and anger at myself; who is born perfect?
It’s something I’ve seen in myself before, in large and small ways: my experience with disability is very personal, and not automatically transferrable to novel situations. Sometimes meeting people with disabilities makes me feel uncomfortable, if only for a moment. Hell, sometimes I still feel uncomfortable with Lily’s disabilities, and it’s not like she hasn’t been part of my life since my earliest memories.
Example: I remember being around blind adults when I was a youngster (maybe 5-6 years old) and being nervous, although that was largely nervousness that I’d accidentally get in their way and cause a disaster of arms and legs and linoleum. (I’d had plenty of instruction in biological differences and in disability by that point. And I knew I wasn’t necessarily supposed to be running in the hallway.)
Example: Sometimes I actually sort of freeze up, because I recognize that the person with whom I’m interacting has a disability – this one happens almost exclusively with people with developmental delays – and I can’t break out of the space in my brain where I feel like I want to recognize that they’ve got something distinctive about them while treating them as a human being who doesn’t need to have a distinctiveness; I feel myself needing to squish the instinct to say that I’ve been exposed to disability for years and years, because that makes disability the subject, and not the person. Sometimes I wonder if it’s because I don’t know what topics are safe, open, friendly – hell, Lily will talk all day and night about her necklace, or Star Trek, or our parents, but football does not one little thing for her. Ditto movies, or food (in general), or the weather. (Like I said, disability has been a very personal thing for me. It has been a facet of my sister.)
Example: I’ve actually worried, having passed someone using a wheelchair on the sidewalk, whether it was inappropriate not to ask them about some mod to said wheelchair that could have been useful for my sister.
And so on. And, you know what? It happens for me in other ways, too, this social awkwardness. Sometimes I feel tension between recognizing and setting aside someone’s religion, or age, or gender. You know what else? It’s something I find deeply embarrassing.
I guess what I want to say here is this: growing up with my sister’s epilepsy didn’t prepare me for meeting someone born deaf, or someone with atypically developed limbs. Growing up with Lily’s visual impairments didn’t prepare me for meeting someone on the autism spectrum, or someone with cerebral palsy. I feel like that’s not something I’m supposed to admit; as a sibling, am I not supposed to be “better” at coping with any and all people with disabilities than people who grew up without atypical sibs? Here is what I’m working on believing: I’m human, and allowed to be imperfect – and as long as I squash that immediat discomfort I might feel when encountering something or someone with a noticeable or declared difference and return to being a human and treating other people as human as quickly as possible, it’s not to terrible to have felt that flicker of discomfort.