Independent living, for sibs who are typical and not

Today’s question: what does it mean to live independently?

For Lily, we’ve treated this as a goal. We want her to live her own life. She needs assistance in this – which is why you’ll notice that I sometimes call her program “assisted living” and sometimes independent living or other things – because she can’t, for instance, give herself the several medications that she needs every day, multiple times a day, to control her epilepsy. She needs help with basic jobs, like washing her hair or grocery shopping. That said, of great importance to us all is that Lily also have help doing what she wants to do, be that go bowling with her friends or play loud music and dance. I’d love to see her call the shots for normal activities – going to the mall, “watching” a movie, doing her own grocery shopping, working out, taking enrichment classes, maybe even going out to eat. Happily, to a large extent, this is starting to happen. (I surprised my dad the other day when I told him that Lily’s team had been working with her on a present for our mom for Mother’s Day. Normally, he and I plan something and help her complete it. This year may be the first year that I am doing my own thing independently of her!)

So, for Lily, independence means being able to direct her own life outside of the parent-child relationship. Which I think is how many of us feel about independence, given the American “moving out at 18 to be your own adult person” storyline. Mom and Dad will always be around to love you and support you, but you get to call your own shots.

For my family, there is a small additional layer. My parents have stipulated to the managers of Lily’s team that she is to have as close to what I do as is possible. Hence, a nice apartment, cutely furnished (yeah, we’ve ended up with some identical choices from Ikea), safe and comfortable. There are toys (my knitting, her beading) and media (CDs and DVDs) and phones with which to call home or friends.

For me, well, let’s say I’ve been struggling with this concept recently. What does it mean to me to live independently of my parents and/or my sister? Too often recently I’ve despaired that my life isn’t ever going to be entirely for me as I think about where I might want to find a faculty position and whether I want to think about another postdoctoral fellowship. I’ve stifled sharp words to throw at people who exclaim wonder over how having children changed their lives, because suddenly “your life is about someone else.” Yeah, no shit. Some of us have known that since we were in grade school, thank you very much, and it’s much less thrilling when you grow up thinking that way. (I will note here that I’m intensely curious about how childrearing has been viewed historically, but will keep to the topic at hand.) Independence for me means building a compartment of my own, but I don’t know yet whether it involves termination or compartmentalization of my relationship with my parents. I do know that it’s not the same situation with my sister; my relationship with her is much more intimately intertwined, since her future is in large part dependent on me.

Independence has also taken an ominous tone for me over the past week. One of my friends, picking apart something I said over lunch, got into a quick psychoanalysis of my behavior. Apparently, my general lack of asking for help (a problem that has been majorly bad since I nearly failed my first semester of calculus in high school) manifests to external observers in ways I never imagined. His examples were my preference for using the self-serve lanes at the grocery store, and opening a door for myself next to him (or others) who were walking in the same direction through the paired door. This shocked me. Am I really so motivated to take care of myself without any help from other people that I unconsciously engage in actions that push them away? How does that reconcile with my feeling that I want a partner to help keep me balanced? How does that relate to my recent phase of loneliness, particularly for female friends since I work all day in a male-dominated environment?

Aside: …amusingly, this may be affecting my current self-decoration games. I’ve been wearing earrings and painting my nails, arranging my hair in ways other than my simple ponytail or bun. I even bought some new cute t-shirts at Target! In the meantime, I’m working on a series of posts about how our family life is affected by religion, and how the intersectionality of religion, race, sex, etc. affects Lily and me.


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