I took that photo above last fall, about this time of year, maybe later, but as things go, it seems like a lifetime has passed. I wonder, and not in a self-pitying way (there’s time enough for violins and trust me, I grind many a bow), if I’ll ever get to really go anywhere again. You don’t have to comment. Resentment is no longer, strangely, but rather shorter. I have friends and relatives off to here and off to there with if not for nary a care at least an exquisite and unrealized freedom (guilt the reverse of resentment and both dumb).
Here’s the musing:
The newsletter or aggregator, Disability Scoop recently published an article titled “How Families with Children with Disabilities Can Find Support.” The writer presented a woman with a two-year-old child with autism who was in her doctor’s office, seeking help for a sudden case of Bell’s palsy. The doctor, who’d determined that the condition was due to stress also had the genius idea that the woman needed to practice more self-care. He evidently spoke sternly to the woman, according to the writer. The article then goes on to acknowledge that it’s often the systems of care that contribute to the ordinary stressors of caregiving (excellent, I think), but then it gave some advice which included: self-care (defined as going for a walk, meditating, etc.), finding support, dancing in the living room, and the best of all: shifting your mindset. Okay, I’m going to be blunt here, as a person who’s spent twenty-eight years — nearly my entire adult life — caregiving. There have literally been absolutely no changes to said systems of care and I’m thinking this has a hell of a lot more to do with ridiculous patriarchal admonitions and expectations that subtly shift blame on to parents (more often mothers/women). Disabled persons themselves are considered either angels or burdens, right from the start, by a culture that fosters intense individualism or an insufferable obeisance to a higher power, both of which absolve it of any kind of community care. It’s a culture that also finds those who are caregivers worthy enough to be labeled amazing and saintlike yet unworthy of real empathy (because I could never do what you do), or respite, much less compensation. Do I have a solution to any of this? Do you?
I think it’s impossible, and that’s not going to be alleviated by any dancing in my living room or shifting my mindset.
And so it goes, as the great Kurt Vonnegut said.
Here are the four beauties, the first a poem by May Sarton, the second a poem by Hannah Emerson, a non-speaking autistic poet, and the third a poem by Dorianne Laux. I discovered all three videos on the remarkable website “The Marginalian” by Maria Popova. I think Popova knows exactly what respite and community care look like. The fourth is a recent photo of Sophie, wearing a crown I made of olive branch and fall flowers.
Sophie in her mother-made crown is glorious. As are you. It occurs to me often that I may now never go to any of the places I dreamed of seeing in this life. For different reasons, mine having to do with body pain. Santorini with all its stairs and steps, for example. Your fatalism (if that’s what it is) feels familiar. I’m just too worn out from wanting to bother railing at the fates. So I shrug. Whatever. You, though. I believe you will still go places. Your boys will be part of this adventure.
This empty self care concept is a cop out - in my humble opinion. I wonder what this doctor had in mind? Regular meals? More liquids, less coffee? A yoga retreat? A massage? Rest or wait, better sleep? A dance class? Mindfulness meditation?
In my experience, I can best take care of myself with support, and by that I mean financial, physical, emotional, regular and reliable support. Not some talk by a doctor.
Thank you for these wonderful links and the image of your very beautiful daughter.