I agree with nearly every single word that has come out of her mouth thus far, but her presentation style is a little ... jarring. Intense. Earnest. Unchanging. The format seems to be either (a) her addressing the camera directly, tenting her fingers and holding her head at an odd angle, sometimes on the verge of tears or (2) these uber-idyllic scenes from her family's farm (she home schools all six of her kids, God bless her) with her narrating. As Matt said, there's never any variation in this pattern, whether she's talking about carpe diem-type happy stuff, of relating her earliest memory wherein her 2 y.o. sister was hit and killed by a truck.
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| No sunshine or birds today, but I still love this window. |

Another main point of hers is that thanksgiving precedes a miracle, rather than the other way 'round. Of course you give thanks for a miracle when you receive it, but I think the overall theory is slow down, notice what you have in your life already, give thanks for that, and by slowing down you are more open to receive what you are in need of. And if you're slowing down and paying attention, you're more likely to notice that your prayer has been answered, even if it was not in the way you expected. "Unanswered prayers" is another minefield of potential cheesiness, and that Garth Brooks song springs immediately to mind, but again, I am on board.
She also discuss the idea of "the hard thanksgiving,"and asked the question, "What in the world, in a world where loss is guaranteed, what is grace?" This fits well with some stuff I have been reading for book-writing preparation, some notes on Viktor Frankl, who wrote Man's Search for Meaning after surviving internment in a Nazi concentration camp. Among a ton of other noteworthy stuff he says, "A man who becomes conscious of the responsibility he bears toward a human being who affectionately waits for him, or to an unfinished work, will never be able to throw away his life. He knows the "why" for his existence, and will be able to bear almost any "how." More on concentration camp comparisons below ...
Yesterday she talked about transfiguration, which always makes me think of the Harry Potter series and Professor McGonagall's class. Transfiguration is a really difficult class, nothing that comes easily or quickly - changing one thing into another completely different thing, such that if you hadn't been there to start with you would never know that wasn't always the way it was. Lots to think about.
Another image that stuck with me is that of receiving manna. The Hebrew translation of manna is not "bread from heaven," it is, "What is this stuff?"So Ann was using that as a metaphor, that sometimes God gives us something, hands us something, that is ultimately a gift but initially, all we can do is hold it up and say, "What is this?"or "What the hell is this? What I am supposed to do with it? You call this a gift?"
Stay tuned for more info from this series ...
Now for the "Inspiration Porn" stuff: This is a new term for me, discovered a couple of weeks ago here. There were a bunch of links to other sites with similar information, and another new issue for me, "folks with disabilities" railing against Person-First language. Inspiration porn refers to non-disabled people choosing to find people with disabilities going about their daily lives and doing ordinary things, as a source of inspiration for themselves and a reason for thankfulness. I will 'fess up to doing this exact thing myself on a number of occasions, and I suppose most people have thought it, if not said it. What I took away from it:
(1) The author tells a pretty funny story about being told by a woman on the subway who told her she admires the way the author (? gets on a train every morning and goes to work?). The author (who uses a wheelchair) writes that really, she's already sitting down the whole time so she actually does less work than others.
(2) (Main point) She says that when you use a disabled person's accomplishment for a sort of, "no excuses" approach to look at your own goal achievement or lack thereof, you are basically saying, "At least I am not that person. Life could be worse, I could be him/her, so what excuse do I have for not doing anything?"
(3) Citing the various obstacles a person with a disability has overcome as a reason to admire them really downplays a larger accessibility issue. To cite someone's heroic measure is to overlook exactly how hard this is not just for one disabled person, but all of them trying to do the same thing. One person said, it's not my medical condition that's disabling, it's stairs and bathroom stalls and subway systems without reasonable accommodations that are disabling."
... I see what she's saying, I really do. But I'm also thinking, Wow it is really hard to please everyone at the same time. I'm sure we are going to hear a lot about this kind of thing, about David (heck, we already have people treating us as if, and flat-out saying we are heroes or something because ? We knew he was going to have Down syndrome and we chose to have him and raise him despite the perceived burden?). I suppose I agree with her, but I'm going to choose not to get too upset about it just yet, but to continue to steer people toward a more realistic view, the same way we do when people say, "Oh, people with Down's [sic] are so sweet." In Vosskamp's DVD she talks about Jesus giving thanks at the Last Supper, and though she does not say this, my main takeaway was, Jesus was perfectly aware he was getting ready to suffer a horrible death and he still gave thanks to God, so let me stop being so ungrateful. And then Frankl - if he can survive what he did and then contribute as he did, how can I at least not write this book? Ooops, inspiration porn. Well, shoot. Everything's relative, right? You really can't help it, or at least I didn't help it just then. Perhaps a way to start is, giving thanks for what I have (such as general good health) and not what I don't have (disability). And I'll try to remember that when people say any of the stuff listed above, they are generally trying to be nice so I should cut them some slack. Right?

As we have talked about before, it's hard to know how to respond sometimes when someone talks to me about David. I guess that I try to surmise someone's motivation, as hard as that may be, rather than dwell on the precise words they use.
ReplyDeleteSomeone can avoid blatantly offensive language and still slip into tired cliches about how loving kids with Down syndrome are (is she trying to console us?) or they heap praise on us (is he relieved it's not them?) or they are taking inordinate pride in how they relate to him (as if David exists to make them feel good about themselves).
In most cases people have to go out of their way to offend me --- and then point out to me that they were trying to do so --- but here I'm a bit more thin-skinned and I can see myself saying something I'll regret.
Thanks, Matt. I guess my main issue with the article (again, I see where she is coming from) is that it makes it difficult to feel inspired by anyone or anything without stepping over into this area. I hope she just wants people to think about what they are saying more, before they say it, which of course I'm always in favor of.
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