Resisting the Oppression Olympics is hard

Note from Elysia: this is a bit rambly and emotional. It’s not my best writing. Someday I may edit it. But I wanted to give voice to the emotion, so I’m posting it anyways!

My working understanding of Oppression Olympics can be summed up thusly: “No, no – I have it worse than you because of [insert reason here].” I’ve seen it on message boards devoted to idle chatter, and to blog comment sections devoted to social action. I learned to recognize it, and I try my best to avoid playing, because, well, other than possible minor catharsis or having fun fighting, it doesn’t accomplish much. Usually, it’s pretty easy to do this, because I’m normally just a spectator who can safely observe that the Olympics have started up and I can stay back.

But there’s the insidious way that I get dragged into the fray: the Sibling/Loved One With Special Needs Olympics. It’s terribly shameful. I don’t actually feel like I’m special or the most special because my sister’s influence on my life has been bigger than other siblings. The reason I think it’s insidious is that we siblings are pretty widely varied in our experiences, and it can be extremely difficult to separate the need for understanding and empathy from the need to prove that I’m really different and I’m special, or to test the limits of understanding, and to seek true empathy from People Who Get It. (This is complicated by the residual feeling that I have to distinguish myself in order to *merit* attention, because that was often how it seemed to work to my young self.)

This week’s Moment of Realization came when I was skimming a perspective piece published in Hadassah Magazine, the publication of a Jewish women’s philanthropic organization. (Why, yes, I’m Jewish, and a member.) Nina Mogilnick wrote about going on a ski trip with her husband and their son, Noah, who has autism. The average reader probably finished the story and was touched. I finished the story and threw the magazine across the room.

There were several reasons for this. One was that Ms. Mogilnick had even momentarily listened to the advice of Noah’s autism consultant, who had advised “extinguishing behaviors that set Noah apart from his peers.” Consultant, whoever you are, go f… *ahem* …please think carefully about that advice. It seriously sounds more like a teacher begging for a minimized classroom disruption, rather than an attempt to understand Noah and how his mind works. The singing that Noah’s mom described? Yeah, an irritation at school, but hardly the end of the freaking world. Try telling that to Lily, and she’ll escalate. Or fall asleep out of sheer boredom.

Also, Ms. Mogilnick? I’m glad to know you have two other children. Please, consider telling us more about them, and how their needs were part of this ski trip story.

But the more relevant anger, for this post, was deep, bitter jealousy. I have a single memory of trying to take Lily on a family ski trip when she was older than an infant and able to be carried in a backpack sling. That later trip…wow. We had a bicycle trailer; we removed the wheels and attached my youth skis to the base. We adapted the bike connector to attach to a parental waist. (I say “we” because I helped.) The contraption actually worked decently, although it took some getting used to. But it was a hell of a trip, from that perspective. Can you see, world, that I might envy this family? Noah *just* needed behavioral intervention. I don’t think it’s a physical possibility to take Lili skiing now, what with the seizures and the requisite thrice-daily anticonvulsants, and her blindness, and her mobility impairments.

I also headed out on my Oppression Olympics fit because Ms. Mogilnick lamented her husband’s near loss of his lifelong love of skiing to their son’s disability. Here I have to take a deep, deep breath. Because one of the biggest resentments I harbor is that Lily has stolen my parents’ lives from them, totally unwittingly and unintentionally.

My dad used to be a really accomplished backpacker, hiker, mountaineer, and skiier. He had all kinds of nifty gear in the garage and in closets that I loved to play with as a child. I think the last time he got to sleep in a tent was a decade ago, on a few day car-camping excursion he and my mom sneaked in while I was Lily’s assistant at a camp for blind teens. I have no idea whether my dad will ever get to explore mountains like that again. He has to stay close to Mom and Lily in case of emergency. I resent the hell out of that. I would have loved to have Daddy teach me to climb mountains, to be brave in a wilderness full of life. Instead, I worry that he gave the best of himself to sustain Lily and that nothing I can ever do in the future to help care for her (or Mom) will ever make up for that sacrifice.

Now, I know that we all do this willingly. I know that Mom and Dad love Lily unreservedly and do and give all they do because they love her. And trust me, they’ve both sacrificed and given and done a whole lot. And there are moments when I give in to the utter frustration that damned few parents in the world deal with a child as complicated and needy as Lily. Ms. Mogilnick, I truly sympathize with your horror at Noah’s screaming outburst on the airplane. I really, really do. But part of me hates the fact that a simple DVD is enough to stop your son from screaming, when my sister’s repeated ear tube insertions made the one pleasure flight we took with her hell for all of the plane for all of the descent, despite the best efforts of a really talented and wonderful flight crew. And I’m angry that you and so many other parents have children who “just” have emotional, intellectual, or other primarily-behavioral disabilities when my family would give a whole lot to be able to get Lily to “just” have inappropriate vocalizations. (She wet her pants again this week. She’ll be 27 in a matter of days, and she wet her pants because she woke up and couldn’t find the bathroom by herself because she went blind before she moved into this house.)

It’s not fair, and it’s not right, and I know your column couldn’t possibly have fairly shared the nuance of life in a family with a disabled child. And I apologize for my anger being unfairly directed at you. But to the larger world, I don’t apologize. The anger may in itself be unfair and not right, but it’s real, and I need you to know. So the next time you see me, or someone like me or like Mrs. Mogilnick, clearly straining for sanity and trying to balance a loved one’s special needs with society’s strict demands, think twice before you give us a dirty look.

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