I don't know those people in the photo, but a week ago, when I took the photo, that was the about the fifth time that they had passed Sophie and me and stared, openly, at her. You can't see their children, either, all of whom openly stared with nary a remonstrance (how's that for a phrase) from their parents. I finally lifted my phone and snapped them, deciding that I would perhaps start a new hashtag. The #don'tstarepaparazzi.
Call me bitter or call me dark humored. I don't care.
Yesterday, as I struggled to push Sophie's wheelchair up over the curb -- remember, we don't have curb cuts on our street because the city of Los Angeles is taking its sweet time and only doing so in certain neighborhoods -- I felt beleaguered about feeling beleaguered. These are the times when the perpetuity of this caregiving job sort of overtakes the glory and honor of it all.
Call me bitter or call me dark humored. I don't care.
I pushed Sophie up the small hill that leads to the pathway that leads to our front door and stopped to rest for a moment. I was chatting with a friend from up the street. Multiple minivans were parked in front of my house, the vehicle of choice for the many Orthodox Jewish families that live in our area. They have lots of children because there is some kind of edict in the Old Testament that demands for them to multiply. I have no trouble with the Old Testament and have no trouble with the Orthodox other than a faint discomfort with the oppression of the females, but that could be the subject of another post where I could perhaps rope in my feelings about the current Pope of the Catholic Church who people love to lionize but who might actually be just another chip off the old Catholic block.
Anywho.
A neighbor was having a birthday party around the corner, hence the minivans. As I stood there, bitter and dark-humored, resting from care-giving in perpetuity, a woman who looked to be about twenty-five with a baby on her hip, pushing a stroller with another baby inside, and three little children trailing her, walked right past us. The three little children trailing her stared at Sophie. One child stopped and swiveled her head, Exorcist-style and stared. Her sister scurried to catch up with her mother, her head turned owl-like, her eyes bugged out. The mother turned to call her trailing children to her minivan while I simultaneously reassured the children Hi, there! It's okay to say hello! Her name is Sophie! No one said anything, not even the mother. Sure, she might have been exhausted having just hauled her five children to a birthday party with the rest of the day ahead of her. She might have sensed that I was a Bitter and Dark Humored Caregiver in Perpetuity. She and her three hundred children scurried into their minivan, the automatic door swung shut and they were off, leaving me to my bitter thoughts.
I might have thrown back my head and howled the laugh of the maniac. Yeah! I might have cried, Keep that ridiculous wig on, covering your shameful sexuality! And you, little girl, keep staring! One day, if you choose to stay in the faith to which you've been born, you'll be stared at, too! If your mother keeps having babies, you'll be bound to have a sibling that will have something worthy of staring! I might have grabbed my phone and taken a picture, labeled it #don'tstarepaparazzi.
Instead, I pushed Sophie up the path to the front door and went inside.
Call me bitter or call me dark humored. I don't care.
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ReplyDeleteI love you, bitter AND dark-humored. I love you there and back again.
ReplyDeleteYou don't speak "your" truth. You speak THE truth.
What the fuck?! Sometimes I want to just beat the crap out of the part of the world that doesn't see - doesn't embrace and doesn't honor!!
ReplyDeleteI too love You and Sophie and Henry and Oliver, abidingly. One small part of all of us holding you up .... and waiting for them behind the tree with a big stick.
So glad you are calling this anger out here where you are safe. Do it as loud and as long as you want.
The polite is me is gone for awhile, no nice left in me today - you know.
My experience with all but one Orthodox Jew I came across in Cleveland is that Muggles are invisible to them. For the mother it likely wasn't Sophie she was refusing to look at, but the complete outside world.
ReplyDeleteI love that you snapped the photo of the beach people. I love you, bitter, dark, happy, sad, beleaguered, always brilliant, any way you are.
We went to the beach yesterday -- my husband and two college girls (daughters of friends. Shortly after we arrived, two older women and a young man who appeared to have Down Syndrome arrived and set up not far from us. The two women appeared to be sisters and I'd say Donald's mother was maybe 60. I don't know if I heard a peep out of the sister, but Donald's mother was very loud and rode Donald's ass the entire time we were there. She was on him about getting up and going into the water, about putting on sunscreen, not moving fast enough. Did I mention how loud she was and how she kept saying "frigging" and stopped herself saying "fucking" at least a couple of times -- which makes me think she was actually on good behavior. She kept telling him he was acting like he was five, or like a baby. Somewhere in all of it, we learned that Donald is 27 and the B-A-R-R-Y is no longer in the picture, so Donald and his mother struggle financially. I could almost sympathize with this mother, who was clearly worn out and frustrated. But she so obviously resented Donald and she was so mean to him that I could only feel sorry for poor Donald. Most of the mothers with special needs children that I've encountered have led me to believe that somehow, these children are fortunate to only be born to loving, compassionate, patient, intelligent mothers. I knew it wasn't possible, but it was nice while I deluded myself into thinking it was so.
ReplyDeleteI love the bitter and dark-humored you more than words can express. Taking photos of the starers seems appropriate. Maybe post photos in your sidebar. Mug shots. Most-wanted list. Wanted for heinous and insensitive staring. Armed and dangerous.
ReplyDeleteI'm annoyed that folks don't know better. Wait. That they do know better but stare anyway.
ReplyDeleteLisa: While I appreciate your honesty, I have to admit that as the parent of a severely disabled young adult, I have probably been in the same place as the woman you've described and that I felt uncomfortable reading your observations. I would, in fact, never judge anyone who walks this road -- even the ones who kill themselves or kill their children. It's fucking hard to do it right all the time -- I might venture to say that it's impossible. That doesn't excuse the woman from what she said or the way she said it -- it's less about sympathy and more about empathy, I think. We don't know how she felt in speaking that way, whether she cried later and felt guilty, for example. There is always much debate among those in the disability world about these things, and I know that I'm in the decidedly hesitant-to-judge-the-situation group. That being said, I'm also aware that disabled individuals are the most vulnerable in our population -- subject to abuse by family and the culture.
ReplyDeleteI have been haunted by them both since yesterday.
ReplyDeleteThe road you walk is sometimes impossible. And yet you walk it. Bitterness and dark humor are possibly required on occasion. I wish it were different but it's not. I wonder what Sophie thinks about it all?
ReplyDeletePointedly snapping photographs is much more convenient a response than carrying a large mirror around with you every time you and Sophie are out in public, but these scenarios always remind me of the tour buses that would cruise through the Haight-Ashbury in the '60's, and the hippies who used to scamper alongside holding up mirrors so the gawkers could see themselves.
ReplyDeleteAnd there's Valentine. Miel felt --and was--much more protected and insulated from stares when she had her spectacular dog with her, running vibrational interference.
He could really transform that energy. Better for everyone.
Isn't life full of snapshots? And not anywhere near the whole story. We are all paparazzi .....
ReplyDeleteGood grief. What is wrong with people?
ReplyDeleteI think FullSoulAhead is correct above -- Orthodox Jews, generally speaking, are an insular lot.
I mean I get bitter and dark-humored when we are out of olive brine, so no judgements here.
ReplyDeleteI can see why you would be dark and bitter because in this day and age their just isn't any excuse for bad manners. We know have an adoptive daughter and I am getting tired of people asking me how much she cost and it has been only 5 months. I know they don't mean to be rude and are just curious as to the whole adoption thing, but come on. She is 2, but soon enough she will catch on. So Frustrating!
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