Quick note: a piece from The Daily Beast

My attention was called to an article on The Daily Beast by a posting on SibNet. It’s Julia Rothwax’s reflection on life with a sibling who has autism, triggered by her viewing of the new movie about Dr. Temple Grandin.

I’d like to take a moment to vent my frustration with those commenters who felt the need to tell Ms. Rothwax that she was selfish for bringing up what it feels like to be a sib, and to ask why Dr. Grandin’s sibs weren’t a part of the film. (One commenter noted that in a book written by Dr. Grandin’s mother, there’s a note about her siblings specifically asking to be excluded. If that’s true, more power to them for making their own choices.)

Here’s the thing – even if the sibs wanted to be excluded from the publicity, it’s not wrong for Ms. Rothwax to wonder about their presence or depiction. It’s okay for her to speculate about not seeing people like herself depicted in popular entertainment. (I personally feel like it’s okay for anyone to ask that.)

And you know what? Even if it were a selfish thing to do, even if you could objectively demonstrate that it was selfish of Ms. Rothwax to write that column, it’s the sort of selfishness that needs to be acted upon. We sibs are frequently overlooked – if nobody else is speaking for us, advocating for us, or looking out for us, it’s up to us to stand up for ourselves. Maybe it’s not a huge issue that we don’t see characters like ourselves in films or television shows very often – it doesn’t seem unreasonable to think that Hollywood doesn’t always represent reality all that well, and that there are an awful lot of types of people to consider even if it could. I’m willing to bet that even in families with typical members only, people can feel this way about their roles.

But it goes beyond that. It’s one thing to be ignored in cinema and another to be ignored by doctors, parents, teachers, coaches, bureaucrats, lawyers, therapists, or other assistants. I’m incredibly glad that my parents try to include me in Lily’s care and have often tried to introduce me to those people. That said, I’m still overlooked or ignored with frequency. It doesn’t register with them that, as her sister, I’m privy to aspects of her personality that my parents don’t experience. (Think about it – do those of you with sibs not have things for yourselves?) It doesn’t seem to have gotten into their brains that I am likely to outlive my parents, and will become the legal guardian, conservator, or whatever else that they are…so I’m going to have to be familiar with her medications, treatment history, legal status, and more.

That’s why I notice when Sarah Palin’s daughters are holding her infant son instead of her. That’s why I remember emotional wrenches from watching What’s Eating Gilbert Grape?, although I was too young to really process it fully when I saw it. It’s why I get fussy when I hear politicians referring to health care, or HR people referring to family support, that acknowledges parents and children, but not siblings. And I’m willing to bet that’s why Ms. Rothwax noticed that Dr. Grandin’s siblings were mentioned as an aside, but not featured prominently in the film – because she, like me, has a sibling with special needs. Not all of us choose to be intimately involved with our sibs, but just as they are parts of our lives, we are part of theirs.

So thank you, Ms. Rothwax, for getting your story out there. As the “owner” of a blog that’s devoted to telling my story, and for telling some of Lily’s stories for her, I appreciate it.


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