Where is my sister’s agency?

Lily was feeling like running her own schedule this evening when I called to exchange Sabbath plesantries with my family. She kept asking whether they could go for a walk, possibly to try to manipulate my parents into taking her back to her apartment. (She sleeps at their house every Friday.) For a variety of reasons, some we don’t understand, this gave way to the screaming she had been doing before that part of the conversation. Dad told her that the answer was no, because she was screaming.

Lily rejoined with, “The answer is yes!” And, y’know, repeated it a few times, for good measure. Then she chanted “yes” for still more beats. I was hard-pressed not to start laughing at how solidly she had challenged Dad’s authority, and with such clear language. Even if she was behaving poorly and wasn’t exactly in a position to demand good things. (Yeah, it’s got to be hard on all three of them that she’s got the stubbornness and drive for independence of both toddlers and teens, mixed in with the stubbornness that runs in the family.)

I’ve been struggling a lot recently with the question of my sister’s autonomy, agency, and voice, and my role in her life. One of the blogs that is in my RSS feed is FWD: Feminists with Disabilities.^ One of the points I have seen made there, and agree with very much: PWD have voices and can speak for themselves. It is our job to listen.

Which makes me wonder: how much of my writing her is violating this human respect? Does it matter that Lily can’t speak the words that she wants, or that she lacks the conceptual frameworks she needs to even access those words? Do all siblings have the same reasonable expectation of needing to be heard, even if their siblings’ disabilities may be radically different in scope and nature?

I mean, if Lily were only blind, I’d still want to be sure that my parents heard my voice saying that I wanted attention and love, just as any child would, and that Lily’s blindness shouldn’t supersede either her nor my general needs as offspring. I’d still want to be sure that I knew what the government expected of me as a sibling. I’d really freaking want society to know that their ill treatment, ignorance, mistrust, abuse, and fear of my sister affected me, too, even if those effects were incredibly different from the very direct negatives she experienced.

But my sister is not just blind. She has been deemed by the court to be incapable of self-care and self-determination. So I want my parents to know that I need and want their attention, but also that I need to be kept in the loop when it comes to legal, financial, and medical issues. (For the record, I have great parents, so I am.) I want the government to know that if something happens to my parents, I am the person who will be responsible for managing my sister’s care. And I do want society to know how their interactions with Lily affect me, but beyond the ill-effects of fear and prejudice: I need society to know that because of who and what they have declared her to be, Lily is reliant on me, and I damned well expect that I get what I need to be her advocate.

None of which really makes me feel any better about not being sure that my attempts at advocacy, sibling protectiveness, and vocalization don’t conflict with Lily’s rightful self-expression.

This is not something I will feel comfortable with tonight, or for a long time, I think. But I need to start talking about it, to confront my own fears, prejudices, ignorance, and privilege.


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