I was meeting a client at a famous museum’s lounge for lunch (fancy, I know) and had an hour to kill afterwards so I joined the first random docent tour I could find. The woman who took us around was a great-grandmother from the Bronx “back when that was nothing to brag about” and she was doing a talk on alternative mediums within art.
What I thought that meant: telling us about unique sculpture materials and paint mixtures.
What that actually meant: an 84yo woman gingerly holding a beautifully beaded and embroidered dress (apparently from Ukraine and at least 200 years old) and, with tears in her eyes, showing how each individual thread was spun by hand and weaved into place on a cottage floor loom, with bright blue silk embroidery thread and hand-blown beads intricately piercing the work of other labor for days upon days, as the labor of a dozen talented people came together to make something so beautiful for a village girl’s wedding day.
What it also meant: in 1948, a young girl lived in a cramped tenement-like third floor apartment in Manhattan, with a father who had just joined them after not having been allowed to escape through Poland with his pregnant wife nine years earlier. She sits in her father’s lap and watches with wide, quiet eyes as her mother’s deft hands fly across fabric with bright blue silk thread (echoing hands from over a century years earlier). Thread that her mother had salvaged from white embroidery scraps at the tailor’s shop where she worked and spent the last few days carefully dying in the kitchen sink and drying on the roof.
The dress is in the traditional Hungarian fashion and is folded across her mother’s lap: her mother doesn’t had a pattern, but she doesn’t need one to make her daughter’s dress for the fifth grade dance. The dress would end up differing significantly from the pure white, petticoated first communion dresses worn by her daughter’s majority-Catholic classmates, but the young girl would love it all the more for its uniqueness and bright blue thread.
And now, that same young girl (and maybe also the villager from 19th century Ukraine) stands in front of us, trying not to clutch the old fabric too hard as her voice shakes with the emotion of all the love and humanity that is poured into the labor of art. The village girl and the girl in the Bronx were very different people: different centuries, different religions, different ages, and different continents. But the love in the stitches and beads on their dresses was the same. And she tells us that when we look at the labor of art, we don’t just see the work to create that piece - we see the labor of our own creations and the creations of others for us, and the value in something so seemingly frivolous.
But, maybe more importantly, she says that we only admire this piece in a museum because it happened to survive the love of the wearer and those who owned it afterwards, but there have been quite literally billions of small, quiet works of art in billions of small, quiet homes all over the world, for millennia. That your grandmother’s quilt is used as a picnic blanket just as Van Gogh’s works hung in his poor friends’ hallways. That your father’s hand-painted model plane sets are displayed in your parents’ livingroom as Grecian vases are displayed in museums. That your older sister’s engineering drawings in a steady, fine-lined hand are akin to Da Vinci’s scribbles of flying machines.
I don’t think there’s any dramatic conclusions to be drawn from these thoughts - they’ve been echoed by thousands of other people across the centuries. However, if you ever feel bad for spending all of your time sewing, knitting, drawing, building lego sets, or whatever else - especially if you feel like you have to somehow monetize or show off your work online to justify your labor - please know that there’s an 84yo museum docent in the Bronx who would cry simply at the thought of you spending so much effort to quietly create something that’s beautiful to you.
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Today my therapist introduced me to a concept surrounding disability that she called "hLep".
Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"
And my therapist pointed out that this is not "help", it's "hLep".
Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.
At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.
So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!
Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!
Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!
Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.
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hdhahdhajfbajdnaudb Okay having Thoughts™️ about some of these ‘Odysseus raises Astyanax’ fics. Because. Because if we’re talking about the full odyssey experience. If Astyanax were to survive. He would have spent 11 years of his life growing up with Odysseus as his father. Now, to the main area of thought - Telemachus. Imagine. Imagine being a child, hearing of your father only in stories. From your mother, the servants, your grandparents. Seeing your grandmother succumb to her grief, seeing your mother grow sadder by the day, more sullen, seeing your grandfather withdraw into himself, all because of your father.
The man you are told you look like, the man who left for war, six, eight, eleven, fifteen, TWENTY years ago, left your home in disrepair, left your mother and you to deal with suitors disrespecting your house and name, the man who you are so angry at, yet Also worship as a god, because you don’t have a CHOICE. You can’t love him, you don’t KNOW him, but you love him in the way you love your gods - distant, unknowable, unreachable, and yet you have his face, your mother sometimes gates at you with these sad, sad eyes and you know she’s not really seeing you when she tells you she loves you.
You know he is a man, logically, how could he not be when your mother still remembers every calous on his hands and your grandfather tells you of how he almost set his room on fire one day, but he is only a legend to you. You hear other Kings, Kings from the same war your father left for (they came back, they are already back and he is still gone) discussing him, you hear how he helped end the war with your and your mother’s name on his lips and YET! He’s not here, he’s not here but he can’t be dead, because everyone agrees that he is too stubborn to die.
And then. He is back. And he has a boy with him. A boy who is younger than you, still just a child. And he regards the boy as his own, introduces him to you as ‘your brother’. He hasn’t dishonoured your mother, he took the child from the burning city of Troy because he is merciful and kind and you see it in the way the boy hugs him and calls him papa. And you should be happy, your father is back, you have a sibling now, your mother finally smiles properly again, your grandfather no longer cries when he sees you.
But. This boy. The boy your father brought from Troy. He got all that you have ever wanted: he got your father, from the moment he was Born he got your father, he was there for his first steps, his first words, he taught him how to sail, fight, read, count, he has been there with him through it all and you have never wanted anything more. ‘This child is not his son’ says that hateful, angry voice in your head.
You spend time with your father. He weeps, hugs you. Tells you he’s proud of the man you are now. Teaches you how to rule, it is your birthright, he says. He goes hunting with you and tells you he loves you and that the thought of you and your mother got him through many a peril. You spend time with your brother, you make him laugh, he loves you, clings to you just as much as he clings to your father, you teach him more about Ithaca, the way it is now, because he’s only heard stories. And still, in the back of your mind, you know you hate the child. You despise him with every fiber of your heart even if your mind knows he is not to blame - and that he has dealt with the same thing, just opposite to you.
Whereas you had a home, your mother and the rest of your family, but yearned for more than just the memory of your father, wanted for freedom, the boy had him, in the flesh, soothing his nightmares and teaching him to live, had the open sea and the deck of a ship, the capability to go anywhere, he lacked the stability that you had and despised. He didn’t know his grandfathers, would never get to know his grandmother, only had a memory of a mother and a brother, saw them as saints, as a reason to keep pushing forth.
You are opossites. You don’t know how it happened, as the child is not hers, but your brother looks like your mother where you are clearly your father’s son, yet your personalities seem to have been switched. You’re calmer, much more subdued, you don’t smile easily and are weaker of will. Your brother is loud and boisterous, quick to crack a grin and so, so Brave.
You still get the compulsion to bow to your father whenever he enters a room, to touch him to make sure he is real, at times. He sometimes wakes screaming, seeing horrors that you could not imagine in his sleep and doesn’t feel comfortable in a proper bed for years. He sets the curtains on fire and your father laughs in relief and he holds him to his chest. Your own chest cleaves in two.
Just. Is this anything?
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