My sister has disabilities – when do I tell people about her?Posted: February 5, 2011
I don’t think I’ve spent a lot of time talking about this here, and if I have, well, I’m gonna talk about it again today, and possibly more later. Because, well, this is a tricky situation: those of us who have siblings with disabilities all relate to our siblings in different ways, just like sibs from entirely typical families. Think about it, if you’re in one of those families: when you meet someone new, when do you first mention your sibling(s), and why? Siblings (or a lack thereof) are important to us all, and can be an important topic with new acquaintances.
I’ve added some new people to my circle of friends recently, and I have quite consciously tried to analyze when and how to introduce Lily’s existence. I don’t want it to be a big deal, because I feel like if I treat it like some momentous unveiling, it enforces the idea that disability is scary and talking about disability is uncomfortable. And that’s not true, or shouldn’t be. But it’s also true that Lily is a major force in my life, and I want to introduce who she is in a fair, responsible way that honors how much we love each other and how dramatically some of our and her experiences have shaped me.
Talking about Lily is also non-trivial because the process of describing her disabilities is…involved. I was joking recently with a friend that people ask about Down Syndrome or autism spectrum disorders, because those are so well known and situations like my sister’s are rare; I was joking because I was feeling weird about having just mentioned Lily…on a first date. He responded pretty well, considering I hadn’t really expected to talk about her (as y’all have just read, it’s tricky) and didn’t have a set script in mind. Yes, a script. You think I want to talk to a new, possibly important person in my life about one of the very most important people in my life without some forethought? I should maybe tell you a bit more, here…
It was a great first date, where you just “talk like crazy,” to borrow a notion from Ursula K. LeGuin. We were discussing how we’d each dealt with a particular observance in Jewish tradition, growing up, and Lily kind of throws those off, for my family. He, quite reasonably, asked why we had taken the approach we had. I just said that I had a little sister with severe disabilities, and that she didn’t understand the reasoning but the rest of us did, so we compromised. And he said he was sorry in That Way, the way people do when they have to say something and they don’t know what. I shrugged and told him that was life, and I may also have had a funny look on my face, because I was so distinctly uncomfortable – if things hadn’t been going so well, I might not have really cared so much about this issue, but things were going super well and I knew I wanted to see him again. To his credit, instead of backing away from the topic, he asked if she had Down Syndrome (now you know why I’m telling you this story!), to which I said no (of course). He sort of fumbled with the explanation that he wanted to know what it was about her that would prevent her from understanding, so I told him that, to keep things simple, she has a severe left-right asymmetry that includes her brain not developing normally. And amazingly the conversation moved on, and later, we had a short conversation about accessibility devices without any real angst on my part. (That topic followed naturally from us talking about computers and cameras and handheld devices and getting them to talk to each other.)
We’re going to have to have a much longer conversation about Lily in the future, he and I, if things keep going the way they have been. And eventually, I may have to decide when to tell him (and, actually, a lot of my friends – even friends I’ve had for years or decades) about this blog.
I am actually much more comfortable talking about Lily in a very casual way now that I’ve been writing here for awhile. Most of the time, I simply mention the relevant details in the moment – “oh, yeah, my sister’s got severe disabilities and that’s why _____” or “I know about ___ because of my sister’s disabilities” or similar. I’ve had guests in my apartment who have seen pictures of Lily, and it’s so much easier now just to say that that’s my sister. (It’s very obvious that she doesn’t have one of the popularly-known diagnoses from her pictures, and people generally don’t ask, and if they do, they ask more thoughtful questions.) I don’t hesitate so much to share stories about us with people I know, like coworkers. (Many of Lily’s developmental levels are stuck at toddler, and so it’s all too natural to want to share stories with parents of small children.)
Take home message? Yeah, I have no answer to the title question. Sometimes it just works out, and sometimes it’s a weird mess and you have to try again or give up.