Daily Archives: April 12, 2006

“Sibling issues” in the New York Times.

Standard

The New York Times published an article, earlier, on siblings of disabled people. While they did publish Kassiane Sibley’s response, they also published the following response from Vera Kornylak (emphasis mine):

The emotional burden of having a sibling with a disability pervades so many aspects of “typical” adult life, among them making decisions about marriage (some spouses don’t want that extra child for life), having children (constantly worried your children will be disabled) and deciding where to live (must be close to facilities that provide long-term care).

I’ve always been puzzled by “sibling issues,” myself. I have one autistic and one non-autistic sibling. I’ve never had a problem with either one of them that came back to whether they were autistic or not. I have no idea what “issues” I’m supposed to have with either one of them based on autism-status. The idea of going to a support group of other siblings horrifies me, in part because I’m probably exactly the sort of person they want to get away from and I don’t fit into the plans very well. (Hint: For a lot of the things that really are hereditary, there’s more than one of us per family.) Also because I’ve had enough experience of support groups for family members, to know that they often degenerate into bashing disabled people in general (which is sanctified in some way as “sharing their honest feelings”) and our presence can be very unwelcome because it disrupts the atmosphere where that’s okay.

The phrases I highlighted showed some of the more disturbing aspects of Kornylak’s attitude. Apparently if we need assistance with things, we’re an “extra child for life”, and an “emotional burden” on our families just by existing. She may have loved her sibling as a kid, but for some reason she doesn’t want to bring someone else like her sibling into the world, and apparently agonizes over it. And she thinks she has to live near an institution. (Although in all fairness I might rather live in an institution than with a sister who thinks of me that way, and that’s saying a lot.)

One of my friends before, I met through an agency we were both clients of. She had very little conventional speech, and I watched her carefully to learn (for myself) some alternative ways of communicating, since she never used technology for that purpose. As far as I was concerned, she was clearly very aware of what was going on around her, more than most people even, always reacted to it, and was always saying things about it. And very socially adept, with tons of friends. Which is why I was surprised by her brother’s attitude towards her.

When I first met her, she lived with her brother. And we would stand around, and he would talk about her as if she was not there at all. Right in front of her. He’d say things like, “She looks at the TV listings for a long time before picking what to watch, but who knows if she actually can read things like that, I mean, you know…” trailing off into some sort of assumption of incompetence that he assumed we all shared. He also talked openly about some pretty disgusting opinions of her. He seemed puzzled by my anger at his patronizing attitude.

He was, however, reportedly impressed by my communication device. He’d never heard of anyone who couldn’t speak being able to think or communicate. Which meant that he thought of his sister as non-thinking and non-communicative, despite the fact that he communicated with her on a regular basis. How anyone could look at her and think that baffles me. I can still remember exactly how excited she was to move out of her brother’s house into her own house, with the aid of a supported living program that allowed her to get help with some things.

Attitudes like her brother’s, though, tend to be viewed as more acceptable than attitudes like mine, and possibly hers. My general attitude towards him was “I hope he’s not around when I go to see her, because I don’t want to deal with that patronizing jerk.” She was always more animated when he was gone, too. Kassiane is right. They never ask us about our siblings. Mine were okay to me (or only not-okay in ways that had nothing to do with autism status), and I know others who have been okay. But I’ve met a lot of outright nasty ones, whose attitudes towards us as perpetual children and emotional burdens, and whose hope that they have no children like us, are enshrined and encouraged by attention to “sibling issues”.